Hi all, sorry to making yet another post. My story is well documented, but I cannot stress enough how I so desperately need healthcare. Please, this is a desperate plea to Lupus UK and the powers that be. I know you are all working so, so hard and have done so much for us all as a whole. But please, and I hate to ask this, especially in this time, but can I please, please have some indvidual and personal help please. I so desperately need healthcare and due to well documented failures by NHS Wales and BCUHB, I am completely without healthcare.
I desperately need B12 injections. It is only from the wonderful community on here that I FINALLY have the correct treatment for B12 deficiency that has been ignored and overlooked by GP - only for this crisis to take hold, meaning I cannot have the much needed B12 injections. I cannot begin to describe how weak my body is. The stress is causing alsorts of flares - even that is what they are, I have no idea. I am still in the first 6 months of diagnosis, which everyone says is the worst. I haven't accepted the diagnosis, I don't understand it. I don't know what it means for me and my body. The present or the future.
I am barely standing, barely walking. My body is so weak. the 24/7 dizziness is driving me insane. Unsure if this is B12 related or anything from what neurologist from Walton Centre mentioned, who diagnosed PPPD, getting me proper mental health care from his colleagues - up yours north wales mental health team, up yours! - and sorting physio to help 're-wire' my brain and body movements together (???) and has ordered brain CT with contrast dye (I won't do MRI, had one on right wirst and they had to stop halfwayd through, due to me going intoa panic attack). Haven't got the clinic report through yet, but hopefully will. Especially as I need this for mandatory reconsideration for PIP - whch I was awarded a big fat 0 pints!! Had the letter on Friday. No way could that be possible with everything and about 100 pages of evidence I sent in (I which they only received the week before the date of the decision letter!).
I have no car (written off in car crash in overtaking lane of dual carriageway), no money, no buses through thte village, can't aford taxis. I have the B12 injections here and was due to start them last week - but corona and no car.
I'm within NHS Wales, so all 700,000 volunteers are NHS England only and help for the vulnerable is NHS ENgland only. DIstrict nurse won't come out to me, due to not being housebound. If I lived 12 miles away this wouldn't be an issue - but we have the wonderful devolution, which is obviously working ever so well. According to GP and NHS Wales I'm not remotly vulnerable at all in regards corona. Complete rubbish - newly diagnosed SLE, disease is active, no rheumatologist, no treatment plan, no meds, permantent leukopenia and neutropenia - meaning low white cell count and low neutrophil count, the part of white cells that fight infection. But hey, that's NHS Wales for you!
My limbs and body tingle, so, so much. It is so scary. Limns are weak and weakness down left arm and left leg is getting stronger and more frequent.
So many on here have the answer of 'best phoning your rheumatologist for advice'. I am so jealous of people that can do this. I can't. I don't have access to a rheumatologist. GP filled in IPFR form on the Friday before corona really kicked off in the UK, so who knows if thats even been sent out.
Please help me. I am so tired. I have fought so hard. Please. Please Paul, I need help. Please take on my case, bring it up at parliament and please, please help me get access to much needed healthcare. I have so many documents I have made for answers that I need and timelining everything. Please.
I so desperately need B12 injections. Please. I never thought I would be begging for help. But here I am. Please. My case desperately needs bringing up with Welsh Assembly, Health minister and to top parliament including with the PM - he needs to here me story and the failures that I have been subjected to. Please. This isn't right.
I am still so, so lost with the diagnosis, without B12 deficiency being overlooked, no rheumatologist, no access to healthcare for the rest of the investigations - including lung function that the one rheumatologst at Glan Clwyd was not remotely interested in putting me forward for! He has put in referral to respiratory medicine, but BCUHB isn't fit for purpose (and I hate tory sayings!), GP put me on the list for basic lung function tests with a nurse there, but who knows what is happenening there. I frequently get breathless, even to the top of the stairs - and I am a fit person! Chest pain too. Please, please help me. I am desperate.
I know I don't matter. I know I am nothing. I know I am worthless. The way I have been treated by NHS Wales, BCUHB, Glan Clwyd and GP practice proves this. So please, I am begging, please help me. I need healthcare. I am tired. My body is weak. I have fought long and hard from the age of 7 for life most basic of things. Please. I am done. My body has had enough - in every way. I am so tired. Ohysically and mentally drained. Please.
We are one nation and to get through this, we should all be helping each other, no leaving anyone behind and no division. We are Team GB and we need to work with the rest of the world to resolve this crisis. So why the division? It is clear, devolution and devolved NHS oes not work. It has created postcode healthcare. If I lived just 12 mile away in Chester, I wouldn't have half as many issues - and that is wrong. Please help me. Please.
I am purposely leaving this post (and my one asking for the end of devolution) open for all to see. The rest of my posts are for forum members only. But I am desperate. Please.
You can send all of my posts and all documentation I have to as many people as you like and is needed. I am desperate. Please. Please help me.
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Ceri-NorthWales
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Ceri, call Kevin when you’re feeling better. As you say, you need the help. I think you may just be feeling too stressed to talk to anyone right now? I get that way. But, do what relaxes you (warm bath, herbal tea, a short walk, listening to music?) then call Kevin. 🙏take care!
I NEED healthcare. When I don't undertand something or don't get what's going on I get frustrated. I am currently trying to deal with ESure and PIP and everything else. I hate phonecalls at the best of times, let alone when I feel like shit. Much prefer face to face because then I can read body languange and tell if someone cares, understands, is actively listening and wants to helps. I have a complete lack of trust in people - which 2019 multiplied out and 2020 even more so - particularly the last couple of weeks. I have been in crisis and not even those within 5 miles have helped. A couple I use to work with (18 miles away) picked me up and took me three miles to GP for stitches removal and also came down the previous day to drop of some bits and bobs. When I needed to get to Glan Clwyd for neurology appt with Walton Centre, no one near by would help (not even my sister), a couple again from about 15 miles away, picked me up and took me - they offered the help on a local corona support group. I have zero trust in people. Even more so with eerything that has gone on. I do no believe for on second, any one cares about my lack of healthcare and the desperate need that I am for healthcare.
I am begging, pleading for help and nothing. I just ant a letter to land through the post with an appointment to see a rheumatologist - for as long as needed, none of this 20 min appt, cos I need time - a lot of time! And some transport to get there!
And I would quite like a nurse to give me much needed B12 injections. Why is this so hard! Only in Wales and only within BCUHB. I don't call them Betsi Deathboard with no reason.
All I want - and so desperately need - is some healthcare. We are in the UK, we are suppsoed to a healthcare system for all. This is not the case.
I know, and I think I understand what your saying, I just think that when you get this worked up and stressed you start spiraling downward. I think when you pause yourself, de stress, you come back strong. So I think until you can find something to calm you and clear your head, no use moving forward because nothing will help you. I think if you get yourself calmed down and distressed, you can start all over and call Kevin.
I have already been for a very wobbly walk - not long back. I have to get things sorted for ESure because they are absolute idiots and not sure wherte I am sending the document through and they have massively underpaid me for my car. I NEED to get things sorted for PIP. I have college work to do (a mountain of it) but brain fog is getting in the way - plus everything I have to deal with.
I am begging and pleading for someone to just help and take some stress of me and please get me access to much needed healthcare. I NEED it. I have so much on my plate, nowhere to turn adn as always just have my feet. PLEASE help me.I ma not calling Kevin..I have too much on, feel like crap and there is someone in the same household who I am not having hearding my conversations!
PLease, please get me access to healthcare. Even if it is just someone coming to my house to sta me with one of the 7 B12 injections I have here. And PLEASE get me to see a rheumatologist. I am not asking for £50k in my bank or someone to buy me a car. I need some healthcare. Please, please help.
I hate phonecalls with a passion and have ZERO trust and it is not a phonecall I need. It is healthcare. NHS Wales and BCUHB are incabable of this. Please, please help me.
My situations have confirmed that the human race are an absolute disgrace and cannot be trusted and even in crisis, no one will help. I know I don't matter. I know I am nothing. And this yet again, stabs the knife further in and proves that.
I'm also not convinced the wounds from skin biopsy (skin punch and elliptical) are healing properly. But why would GP or any of the nurses care...... plus, I cannot get there!
Funnily enough, just because corona has arrived and is making its rounds, doesn't mean that all other coughs, colds, virusus, illnesses and disease have disappeared.
I have needed healthcare long before coronavirus showed its' face, so that's no excuse for the shambles of so called 'healthcare' that I have been subjected to. And now because coronavirus is here, nothing else exists. Nothing else matters. Well, I NEED healthcare. And desperately. Please.
Kevin wants to give you help but he just needs you to call him. Sometimes you have to struggle to help yourself. I don’t mean that harshly. Not at all. But if you hate phone calls, but a phone call is what you need to do, I would say ‘just do it’.
I’m sorry the other items, such as with your car, aren’t going well. I wonder if someone could refer you an attorney, or a department that oversees insurance companies. But I’m sure there has got to be some department that keeps them in check.
As far as your skin biopsy, how long ago was it? I had one last year and it healed wonderfully. I’ll tell you what they had me do in case this helps, but you may be a lot further along? Idk, and I’m not a doctor or nurse.
But, he had me cover it the first week, and the second week I was to leave bandages off, but keep it covered with Aquaphor. I am sure there are enough doctors and nurses on here that can instruct you better, but mine is on the front of my neck and you would never notice it unless I pointed it out.
Ceri, could you self inject B12? You can do it subcutaneously if you do not fancy the depot injections. I was diagnosed with Pernicious Anaemia and put on B12 injections. After the loading doses once every three months was not adequate for me. I took all the research to my GP who dismissed it. I decided there and then to take control myself. I ordered vials of B12 from a reputable company in Germany and I self inject. Have you made contact with your Assembly Member? Let them fight for you. Xx
I don't have the energy for that have lost all the fight in me. I ahve fought hard enough, for far too long. I am asking, pleading for help, for someone to do this on my behalf. Plus, this area is now tory, so I ahve no faith whatsoever. Apart from that, nothing will happen. I would like my entire case going in front of the PM, Boris Johnson, so he knows the failures that are in North Wales in BCUHB and in NHS Wales. Time ot end edvolved NHS. I shouldn't have to fight this hard for the most basic of healthcaer and still to be nowhere. I am defeated. I NEED healthcare and someone to takr this on for me. I have nothing left in me and have far, far too much to deal with as it is!
Re: B12. I don't think I cab. It ooks like I have just the B12 part, not the actual injection. Believe me, I have already though about doing myself. Screw the consequence. If NHS Wales and BCUHB and GPs and nurses at the practice cared, they would've just given me the healthcare I need. So if I do it myself and it goes wrong, it's on them, not me.
Why is it so difficult to get healthcare. I ma not asking for the world. Just basic healthcare! It is only from heere, that I have the proper treatment for B12!
And I NEED to see a rgeumatologist, but not for 20 mins. A good morning or afternoon session as I have had no healthcare, nothing explained to me, no idea what SLE means for me, my bd=ody, for now or the future. Treatment options, I'm clearly intolerant to hydroxychloroquine, but cannot discuss this with any healthcare professional. I have created so many documents, made professinals' lives/job so much easier and it is ONLY neurologist from Walton Centre that showed the same respect back. He's brillaint. But he's nothing to do with NHS Wales of BCUHB.
Seriously, why is it so difficult to see a rheumatologist!! People say the first 6 months is the hardest as you are trying to take in and process the diagnosis, what it means and trying to work it all out for you and your body and trialling treatments to find out what works. It's an awful experience for me and I haen't even been able to do ANY of the above. I need to see a rheumatologist and NOW. But NO ONE will help me see one. If I lived in Chester, there would be no issue. I am at my wits end. Will someone PLEASE help. I AM BEGGING!!
I fear our written words aren't enough to help you just now, however well meant, you need more than that. But a spoken word from someone who truly wants to help might just make you feel a little better.
I really wish I could help - and I'm sure many on this site feel the same, your pleas come from the heart and we can see this - but what can we do to start the ball rolling in a better direction? Very little, except send our sincere empathy. Many of us have been where you are now, I know this doesn't help when you feel so low, but it is true.
You are stronger than you think but you MUST move away from where you are now to somewhere better. Please pick up the phone.
Me too. Ring Kevin please. I still think if your B12 levels are better then you will feel clearer and more able to deal with things. Re your AM if they are Tory you are far more likely to get things done at the moment. They want to hit the devolved Labour NHS any way they can ( despite clawing back more and more funding every year. Copy and paste what you have written here and send it to your AM now. Xx
I have tried and tried and tried to get B12 levels sorted, but no one in NNHS Wales gives one, less so within BCUHB. They make the governments measly 'efforts' of trying to get sort Brexit and thowing their toys out of the prams becuase they can't take democracy over the last three and a half years a success!
I have no idea what am AM is, who that is and whatever pointless job it is they do, that will just be a tickbox exercise and not get any work done or any results. The is Wales. I love living here, the scenery, the clear ait, the quietnesss, hate cities, but devolution is complete crap. I have always been fit and healthy, not needing healthcare, other than the odd inevitable injury. FUnnily enough I did not ask for any of the last 13 months to happen!
And no, I ma still not ok after the crash and I constantly see the finally moments, feel and hear the impact, see the bonnet and engine of my car approach my face, complete with the smack of the forehead to the top of the steering wheel and the surreal moment, split seconds after the crash of stepping of the wreckage of my car in the overtaking lane toward the end of rush hour on the Eastbound side of the A55. Very, very fresh in my mind and I am terrified of getting back behind the wheel not that, that is likely to ever happen again with no money, insurance has fobbed me off, undervalued my beloved Kia Pro C'eed and paid it directly to car finance - without my knowledge or me telling them who finance is with! I wanted to use that measely amount to go towards replacing it. I cannot possibly buy another car. Less than £100 to my name, can't get finance due to not being in work, made redundant two weeks' after diagnsis, can't wor until disease is under control which is never going to happen as I have no healthcare and no healthcare in sight despite all of my efforts trying so desperatwly hard to fight for healthcare. Letter on Friday arrived, no PIP, a big fat zero points despite over 100 pages of evidence - which only arrived and went on the system a week before the date of the decision letter so I highly suspect no one has even looked at this. CAB drafted mandatory reconsideration letter for me on Friday. Still awaiting neurology clinic report to photocopy and send off with it.
No one should ever, ever go through even a fraction of what I have, No one.
It shouldn't take someone to get way beyond crisis before someone notices I am struggling. I have one hell of a strong front - unhealthy side of schzoid personality type - had private psychtherapy pre-redundancy, it worked! NHS is shit and knows nothing about mental health. So when I ask for help, it means I am drowning. When the mask slips, it's 'oh shit'. When I am like this its a case of 'I did say I was struggling and needed help!' There are always signs as to when I am struggling, but its alien to people for me to ask for help - hence getting ignored, brushed off or given considening responses.
A protracted B12 deficiency can make you feel the chest pains and horrible symptoms you're going through including what can be mistaken for panic. It's the b12 defficency and lupus that's making you feel this way.
I had a long delay in diagnosis with being unable to absorb B12 (and SLE.) -
You too need both these issues treated.
I understand you're rational rage and trauma reaction right now - I remember it well - but you need to consider that the effects of the B12 deficiency and lupus combined might be effecting you psychologically also - I remember my state of mind was ( correctly angry ) but also warped when it was happening to me.
You need to dig yourself out of the hole you're in - one small practical step at a time. Like Kevin said -call for help, tell the people you contact that the pernicious anaemia combined with lupus may be effecting you're thinking right now.
I self inject b12. It's not hard once you learn. Find a nurse who can teach you how asap - or perhaps seek advice from a local chemist ?
Where is you're GP in all of this ? You're care is his responsibility. If he's gone - find another.
Leave the rage against humanity for when you're recovered. Methodical step by step survival is you're only priority right now.
I t is only through comments on here, that I am starting understand and think that B12 is a big part to play in all this - and have fought so hard with the help of here, particularly from Foggyme, to get much needed treatment for B12.
GP has dismissed, overlooked and ignored this since first discovered in July 2019 - when I had neurological symptoms even back then.
I have printed and highlighted all of foggyme's replies, messages and emails and given them to GP, it was only then and after a long time, that they thought about giving me B12 injections. Neurologist (from Walton Centre) confirmed this is essential on March 20th.
I am still fighting for the correct treatment and fighting for much needed B12 injections to start. I am awaiting a call from GP this afternoon to discuss this. I am going to say I can get to the surgery once an once only and am requesting a teach on how to self administer, asking for B12 njections to go on repeat and prescriptions to be delivered - unfortunaeky this village doesn't have a pharmacy. It's has two pubs, a cricket club, gold club, garage, wedding dress shop and a little hairdresers, but no pharmacy and the nearest is 3 miles away (in any three directions).
The B12 injections take a bit of time to kick in and for you to feel the benefit - but from what you've said- I can almost guarantee once it does - you'll feel you're life and you're equilibrium come back.
Pernicious anaemia is a serious condition. It's worthy of an fast response. Don't give up until you get one.
Thank you, Freckle. I hope this time, I finally do get the much needed treatment. At the moment, can't imgine what anoything else feels like, I have no idea what that is or what it is like to feel the sheer weight of the drakness of for my body to be so weak - and this is someone who just 13 months ago and before, walked/hiked for miles a day, double spin sessios everyda and one or two gym workouts per day - before being struck down suddenly wth pneumonia which I was in denial over and tried to battle though - even went to spin and got kicked out cos I was that bad - oops! Lesson learned!
Music connects all of us and gets us through so much. I discovered a band called Citizen SOldier last summer and wow, their music stirkes a cord. Weight of the World, Let it Burn and Found - all increible songs. My ultimatimate is The Light by Disturbed, always struck a cord with me, but every word is truth. It is so, so true and I have lived it. First heard Oct 2016, it wasn't until 2018 that I fuly understood it, due to personal experience and finding out where it all began for me - long before when I thought it did, which was my dad's fateful accident and death. It was infact 10 years prior thtat it began. The Light is brilliant and has me through so much. Linkin Park got me through my childhood, Somewhere I Belong, still one that I hold close to my heart. Leave Out All the Rest, perfect. One last song, that I will mention, Something To Remind You, by Staind. There really are no words to describe how much this song means to me.
Yep. I remember being so tired I had to take to my bed and my entire flat became rancid. I couldn't care for myself and at one stage I felt sure I was going to die in my bed as I couldn't get care anywhere - they insisted it was some kind of extreme a panic attack - and this was without a pandemic going on.
Dizziness , pounding painful heart, horrific fatigue. All fixed with the injections. ( and better lupus treatment )
Hold on to all that good stuff to help you through all this.
I have to sign off for now - ( to sleep ) but please let me/us know how things go.
Music does move mankind (women too😆) I always find I work out better with certain music, I relax better with certain music, etc. it definitely affects our mood and energy level. Ceri, my best to you!
Oh yes!! Last week, the 90s classic 'All Together Now' by The Farm cam eon Absolute Radio - oh wow, dancing and singing aroud the lounge no one was watching ahhhhhh, so good! And yes, womenkind too, I hear you there!
Ceri - north wales - please know that many of us know how you are feeling and I personally having just seen this will contact the welsh authorities. in the meantime try (albeit not easy ) to relax. you are not worthless your life matters.
I have sent an email to the first minister wales and copied head office lupus uk. I have also sent a message to HDd.volunteerForHealth@wales.nhs.uk.
in the meantime keep in contact here and please call 111.
Take a deep breath and try and chill first of all. You have been offered advice by Kevin so please take him up on that and call him, no excuses. You must be using so much more energy in text form, including replying on others posts. We are currently experiencing a global crisis and people are losing their lives. This HAS to take priority as the moment. Take all the advice you are offered and phone Kevin. Relax... breathe... you can and you will get through this.
All I will say to you Philosophy is you must be new to autoimmune conditions if you are seriously asking if I have never been in a crisis! Thanks anyway. Have a good evening.
I'm sorry but it's very helpful. Ceri is in crisis in more ways than one and she does need to accept help when it's offered and also contact 111 as advised. Right now, I'm going through a really hard time with my lupus and experiencing new symptoms which are causing me a lot of pain and discomfort. What can I do about it at the present time....... Absolutely nothing because we are in unprecedented times with a global pandemic which is killing so many people. Everyone is so busy, rheumatology doctors and services are trying their hardest as well as getting relocated to other medical fields. Now this isn't something I'm picking up from newspaper reports or social media, I'm witnessing it. As I said before, I'm personally in a lot of pain and discomfort, I'm also classed as at risk due to lung involvement but I'm a nurse and along with many others we are trying our best even to our own detriment. Whether we like it or not, covid 19 takes priority. So please accept the help that's offered because people here do listen
Yes thanks Carol. It’s very difficult for us all but I am clutching at any advice that may be helpful. To have the added stress of having to work like we do on the frontline during this crisis is terrifying. I’m off all my immunosuppression so I’m out there SLE, Sjogren’s and chronic neutropenia. I’ve not long since been started on Pregabalin as my rheum consultant thinks I have connective tissue disease also. It is beyond terrifying. I just want to be at home safe. You look after yourself lovely xx
Yes it's a very scary time, made more so by the complete ignorance and stupidity of some of the general public. I can't believe the reports/videos I've seen of crowds going about not giving a hoot to advice given. Like you say, having an underlying illness doesn't help either especially when stress can make it so much worse. I wish I could go to sleep tonight and wake up to what's just been a very bad dream. Stay safe always xx
Yes I am. I tried to work from home as the patients are being screened prior to visit or coming to clinic so there is lots of phoning to do. Unfortunately staff are going off sick so I couldn’t. The bizarre thing is I’m only not on immunosuppression as there was an element in my blood (can’t remember what it was) which stopped me from getting it. I’ve done a risk assessment and I don’t fall into the high risk group as it’s quite vague on a few points xx
I am assuming that you work for an NHS Trust? I have seen many different risk assessment charts from various Trusts and they seem totally inadequate to me. They seem to be written in a way that classes all staff at risk into one catagory. It seems that only staff with cancer and who are on chemo would be sent home, but if they were unwell and recieving chemo then they wouldn't be at work anyway.
It's amazing how many health care workers seems to have AI disease of some sort. I'm sure that there is a link there.
I wish you well and take very good care of yourself.
Yes I agree with this 100% but I don’t know what to do. I work for the NHS. I’m just sitting back and accepting things as I’m so tired. I’m also trying not to bother anyone which I know is not the right thing to do. Thank you and you take care also x
Yes I know it seems bizarre. I think the risk assessment at work is too vague but basically because I am not on immunosuppression I have to work. My rheum nurse said the same because my neutropenia is chronic I just have to get on with it. May I ask who Paul is please? Thanks for the advice, much appreciated.
I have also seen the reality of the situation. I ahad to attend a+e follwoing the crash on Match 16th. I attened Countess of Chester and yes, it was one hell of shock - and the staf were being told to keep quiet at the time. Wouldn't know about now. Also they sent me through to xray (two xray rooms) and asked me to sit and wait. Obviouusly fair enough. What was shocking, is there was an obvious COVID-19 patient, very ill in the paid adajacent to the back of the chair I was asked to sit on. She had a mask on and was having fluid being drained from her lungs. She obviously so ill and I hope she has recovered, even a little by now. The staff had all the protective gear on and masks, she was taken in to xray and on exit, they cleaned the room, door and handles and removed their protective gear without using their hands, It is shocking they let me sit the, no protective gear, nothing sitting there, waiting with the poor lady - especially knowing full well about SLE diagnosis and the leukopenia and neutropenia, and when they first checked my temp it was 39C. (I felt absolutely fine though and each ear kept giving different readings, I'm assuming SLE related, but wouldn't have a clue and no way of finding out either due to no healthcare!) What they should've done, was close off the waiting area until they had done everything they needed to for the lady, cleaned it alll down and then told me to sit and wait.
I have been fighting for healthcare long, long before coronacrap turned up and now have ZERO chance of getting ANY healthcare, even the most basic including B12 injections, which I have 7 of in my house and that I so desperately need and GP has overlooked and ignored this since first discovered in July 2019! Perhaps, just maybe - maybe - I would feel even slightly better, both physically and mentally if someone just stabbed me with the goddamn needle! I don't care about physical pain - not that it would even hurt and I enjoy watching things. I even watched them take a scalpel to my shoulder (that I injured in the crash) and watched as she gently cut away to get the skin biopsy, and watched her stitch it up.
Everyone here is tying to be supportive, your hostility towards others is shocking. You've made your thoughts on the NHS very clear on every occasion you can and funny enough, your two most scalding replies have been aimed at the nurses here!! No one here has had perfect care, the NHS isn't perfect, but its doing its bloody best with the resources it has. People sometimes slip through the net and not just in Wales, you feel you have, well do something about it then. You've been given advice by so many people here, Kevin even asked you to call him but you refused stating you're so weak with fatigue and brain fog, and yet you text war and peace about how you're being hard done by!! Really?? Now some folk may think I'm being harsh but this is Lupus UK, it does its best to provide, support and guidance, it's NOT the Ceri side show so stop the attention seeking behaviour and listen. Actually stop and have a look over the replies you've received, not only in this latest post but the others as well. If you actually take time to think about others you will see all of us have had a hard slog reaching our diagnosis, it took me nearly 4 years, and others still haven't reached that stage. Our lives aren't set in stone by our lupus or other forms of autoimmune, it's what we do about it that gives us life. Take advice, seek help and really think long and hard before you so harshly criticise the very people who for now are on your side , it's you that will push them away.
Attention seeking behaviour? Are you for real? I have been trying to get help and healthcare for so, so long! And if you knew me, you'd know Idon't ask for help and have one hell of a strong front, so when it slips, something is very, very wrong!
Also, it is not the NHS and the frontline staff that I am knocking. It is NHS Wales and BCUHB. Frontline staff do an incredible jon and do so much with the very little they have. I am incredibly greatful for the NHS, it is how it appallingly run and devolution of NHS that I have a problem with. If you had actually read any of my posts, you would know this.
And if it wasn't for nurses, I wouldn't have gone through most, in not all, medical sthings that I have. Nurses are so over worked, under appreciated and under valued. The care from nurses is incredible. It's hit and miss with consultants in my opinion, but the knowledge is off the charts!
I also think you should be looking after yourself more, I can understand why you are working as hard as you are on the frontline in all this, but you do need to think of yourself, too.
Keep up the incredible work you do, it is seriously appreciated.
Also, to point out, I have tried, so, so hard as have other frontline NHS staff to get me some much needed help with my mental healh - especially since I can no longer afford provate due to redundancy.
North Wales Mental Health Team rejected no fewer than 10 referral frm GP, consultants, paramedics, a+e and police. And that's all since last May - that is how much I have spiralled. I have taken my case right to the top, to the Head adn Senoir manager of NWMHT as their actions are killing people. No one shuold go through what I have and veryone deserves help. Even if just one person gets the help they need as a result of my actions, then that is my life, death and efforts not wasted.
Neurologist in Walton Centre is sorting me some much needed mental health support with the Walton Centre adn he was visible shocked that NWMHT have rejected me atleast 10 times in less than a year.
Very wise words Carol. Thank you for all that you are doing for others. I do not mean to sound cheesy but I understand what it must be costing you personally and professionally. Please keep yourself safe xx
Ceri...I so wish I could jump in my car and come help you...but I can't. All I can do is leave you some words and suggestions on how you can get things moving.
And sorry...this is going to be a long reply. The aim is to set things out clearly so you can simply print this reply and show it to your GP. It will hopefully save you having to make quite complex arguments at time when you’re (understandably) least able to do so.
The reply includes:
i) A statement from the public health division of the Welsh government stating that treatment with B12 injections will be maintained for those who are experiencing the symptoms of B12 deficiency (that's you) - subject to prior health screen to ensure no symptoms of coronavirus.
ii) A copy of a reply I left in one of your previous posts a) summarising your history of B12 deficiency and b) suggestions on how your injections can be obtained and delivered consistently during the national crisis (I'm not sure if you saw that reply so pasting below so you can find it easily).
iii) contact details for various health advocacy services in Wales - a health advocate would be able to help you with the things you are finding so difficult at the moment
iv) A link to the government website where you can register yourself as a vunerable person - and thus have access to additional support services that may be available.
So, here goes...
First...the vitamin B12. I understand that your GP has written a treatment plan, prescribed the B12...but not actually made arrangements for you to start the injections yet? There was also an issue about your GP prescribing the intensive treatment regime (mistakenly thinking that this had to be authorised by a neurologist)?
So... currently many people who have B12 injections are having these stopped by their GP's due to the current national crisis. Many are unaware that:
A) B12 is classified by the WHO as an essential medication
B) Those with B12 deficiency cannot draw on B12 stores from the liver and have to rely on getting B12 from injections to prevent neurological damage and maintain health.
C) Failing to start treatment or stopping treatment can expose those with B12 deficiency to an increased risk of infection (not good in view of the coronavirus) and potentially lead to irreversible neurological damage (subacute degeneration of the spinal cord).
The chair of the Pernicious Anaemia Society recently wrote to the health ministers for all four countries in the U.K. outlining the problems experienced by all those with B12 deficiency who are having their treatment stopped (that's a lot of people). The only reply, so far, is from the Welsh Government, as below:
[Extracted from the PAS website/newsletter - italics are direct quotes from the Welsh Government]
Public Health Division of the Welsh Government
We have received a reply from the Public Health Division of the Welsh Government. The following is from the letter:
‘First let me re-assure you that stocks of vitamin B12 injections are not affected by the current situation with COVID-19’.
And the letter goes on to explain that, rather than patients having their injections simply stopped they will now be assessed to determine whether he or she has any of the symptoms of the Covid-19 virus:
‘If patients, such as yourself, have made an appointment with your GP or practice nurse, for your next injection there will need to be an assessment made on the day of the appointment to ensure that there are no symptoms suggestive of infection.’
This is, unfortunately, all that we can hope for bearing in mind that the virus is spreading so quickly and front-line medical staff have to be protected. The letter goes on to explain that the injection for patients who have the symptoms of the virus may have to wait until their symptoms have disappeared before they receive their next injection:
‘The current situation may mean that the interval may need to be extended – this will be based on clinical need with your GP’ ‘I hope this information reassures you that where appropriate vitamin B12 will be supplied’.
It will, unfortunately, take a while for this information or instruction to permeate down to individual GP Surgeries and Health Centres. We have yet to hear from the Health Departments in England, Scotland and Northern Ireland.
Ceri - the above will take a while to filter down as an instruction to GP surgeries but you can show the above to your GP if they are reluctant to start your treatment because of coronavirus issues.
And here's a copy and paste of a previous reply to you, summarising your history of B12 deficiency and making suggestions of ways you can get your treatment plan put into action:
To recap on some facts (and add a couple more):
1) you have serum B12 tests confirming B12 deficiency since (if I recall correctly) July 2019 - which has not been treated.
2) you have neurological symptoms - all the guidelines (BSH, BNF, BMJ, NICE etc) state that those with neurolgical symptoms should be treated immediately to prevent an irreversible neurological condition called subacute degeneration of the spinal cord.
3) B12 deficiency is diagnosed and treated by at the primary care level, by GP's
4) There is no requirement for a GP to gain authorisation from a neurologist to commence treatment for B12 deficiency. Nor to prescribe the intensive every day B12 injection regime for those with neurological symptoms.
5) If (and only if) neurogical symptoms do not resolve with B12 injections, then it is usual to refer to a neurologist to rule out other potential underlying causes for the symptoms...whilst continuing treatment with B12 injections.
6) Your treatment plan should be implemented - immediately - based on the fact that you have neurological symptoms. (No point in having a treatment plan if it's not implemented)!
6) Your GP is leaving themselves exposed to a potential claim of negligence if they withhold or refuse treatment.
7) Your GP is exposing you to the potential for severe and irreversible neurological damage and other harms. Treatment for B12 deficiency is not 'optional' but essential to life. Treating B12 deficiency early enough prevents permanent damage and increases the likelihood of full neurological repair. Withholding treatment is detrimental to your long-term health. Untreated B12 deficiency is ultimately fatal (I say this not to frighten you but because many doctors are not aware of this fact).
So...what can you do...a couple of suggestions...
8) Telephone your surgery and ask for an appointment to commence your B12 injections. If an appointment is not available, ask for an urgent telephone consultation with your GP. Please do not be dissuaded if you are told that B12 deficiency is not an emergency. It most certainly is - you’ve been deficient for nearly a year and have neurological symptoms. (Have the NEQAS Alert handy from one of the previous links I sent - this is a Treatment Alert instructing GP's that injections should commence immediately if neurological symptoms are present).
9) Go through the points above and ask your GP to arrange for your treatment to be commenced immediately.
10) Ask to be shown how to self-inject (IM, in the thigh) so that you can continue injections at home (given the current circumstances, this should not be a problem and will protect you from possible contact with infected patients in the surgery - also decreases their contact with you, so safer for them too).
11) ask to have B12 injection ampoules put on monthly repeat prescription (enough for every other day). Also ask for syringes, needles and a sharps bin (for disposal of syringes). They may give you a few to get started and then suggest you buy your own (PM me if you want details of a reputable supplier).
12) if they still refuse...ask if they are also refusing treatment for diabetics (nobody would do this but many fail to recognise that refusing B12 injections is as equally dangerous)!
13) Also worth noting that many surgeries are changing over to telephone consultations - but they still have to see those who need to be seen - and treated. And that's you (for all the reasons outlined above). Backed up by the response from the Welsh Government!
Although the self-injecting your own B12 may sound like a scary option, it's the mostly likely (and safe) way to ensure that you get the very frequent injections that you need right now. It's really not so bad once you've done the first one. And you've been without treatment for far too long!
IMPORTANT: Please do not attempt to self-inject your first B12 injection without being under direct medical supervision. There have been rare instances of anaphylactic shock and if this occurs, immediate medical attention is required - possibly including resuscitation. Once you have had the first injection and (hopefully) been taught to self-inject by the nurse or doctor at the surgery - no problems.
Another option if your GP still hesitates to prescribe the intensive regimen of treatment (though goodness knows why)...
14) Ring the hospital switchboard where you were due to have your neurology appointment and ask to be put through to your neurologist's Secretary
15) Explain to them that you have had a confirmed B12 deficiency since July 2019, that you have neurological symptoms, that you are not being treated for this, and that your GP is refusing to treat you unless treatment is authorised by a neurologist.
16) Tell her that your appointment has been cancelled, you are concerned that you will develop irreversible neurological damage, and please can you have an urgent telephone consultation with the neurologist. This should not be a problem - most out patient department are changing to telephone consultations right now.
17) If and when you manage to speak to a neurologist, start by telling him you have B12 deficiency, outline all your B12 blood results (with reference ranges), then explain that your GP will not treat you until treatment has been authorised by a neurologist (they should be suitably horrified).
18) ask them to write to your GP urgently to authorise treatment with B12 injections (every other day until no further improvement, as per BSH and BNF).
19) Once treatment is started, this gives you a bit of ‘breathing space' whilst you wait for another neurology appointment to assess whether there is another underlying cause for your symptoms (it's possible to have B12 deficiency and another underlying neurological cause simultaneously (I do). But that doesn't mean that the deficiency shouldn't be treated!
And getting treatment for the B12 deficiency will improve at least some of your symptoms (perhaps more than you think) and help whilst waiting for your appointment with a rheumatologist.
It sounds like you could really benefit from having a health advocate to help you deal with what's happening to you. I've no idea what access will be like at the moment, but it's well worth trying to access some support that way.
Here's a link to the social service advocacy services...they should be able to provide you with advice about accessing health advocacy services (it works really well so please do try)...
Here are some other contact details for charities that provide similar services:
Advocacy Support Cymru
Cardiff
Closed ⋅ Opens 9AM Mon · 029 2054 0444
Mental Health Advocacy
Bangor
01248 670450
Mental Health Advocacy Scheme
Blaenau Ffestiniog
01766 830021
Non-profit organisation
And finally, if you have medical evidence (consultant letter etc.) of confirmed diagnosis of an autoimmune condition (if I recall, Lupus?), then you can register yourself as a vulnerable person. Here's a link to the government website where you can do that (you'll need your NHS number to register):
I've no idea what services Wales are providing to those who are vulnerable, but at least if you register, you'll be able to access anything that may be available.
It's worth noting that some (probably many) people have yet to receive 'official' notification of vulnerable status (me included). This is a mighty feat of organisation and I suspect that many will 'fall through the gaps' (largely due to inaccurate coding on GP and hospital systems). I also suspect that the government figure of 1.5million is an underestimate! If you do register yourself, please do not be distressed if you don't get a swift or even timely response. I can only guess that they’re working as hard and fast as they can...and so many people to get too!
I have been 'shielding' (I hate that term) as I appear to be in the highest risk category. I may (or may not) receive a letter to tell me to do so!
Ceri - I know you hate the phone but the only way to break this log-jam is...to get on the phone - GP surgery first. Getting your B12 injections is something you can take control of by pushing your surgery to start that treatment plan (save energy - use the arguments above 😉). I feel sure that at least some of your symptoms (this can include MH issues) are due to a proven long-standing B12 deficiency and that you'd notice improvements in your health once on an appropriate and consistent treatment regime of every other day B12 injections. So please, do pursue this as a matter of urgency...it will be well worth it!
Anyway Ceri...I'm so sorry that all I can offer is too many words and a couple of lists!
Rest assured that everyone here knows exactly what you’re going through (it's happened to so many of us - those outside Wales too). It's frustrating, demoralising...heartbreaking...but please don't stop trying. I know it's difficult to believe right now, but you will get there.
Foggyme, as always thank you. Thank you so, so much. Re: B12 I have already printed and given them all of your posts, messages and emails (and highlighted the important parts because I know they aren't too good at reading things). I cannot print atm, as I print at college and they are closed and at college I get free printing allowance each term - so useful. This acedmic year alone, I have printed/copied over 1200 pages and less than 200 of those are college related. The rest is for appointments, documents of evidence of everything, what each person needs and for PIP. I have a 'to-do list', detailing who has had what and when.
GP has said all I need to do is book B12 with a nurse and get there. I exlpain I can't get there, due to all the reasons I have said, no car, no money, no buses, can't afford taxi and no one willl help - not even my own sister. The will not send a district nurse to my house as I am not housebound and - understandably - they are run off their feet in amongst everything that is going on. All 700,000 NHS volunteers are for NHS England ONLY. If I lived in Chester, even without a car, I would be fine as one of the volunteers would come out to me. And despite being newly diagnosed SLE, no rheumatologist, no treatment plan, no meds, disease is active and permanent leukopenia and neutropenia, according to GP and NHS Wales I am of no additional risk at all to coronacrap. NHS Wales and BCUHB for you right there! Go figure.
Yes...B12 is complicated and I'm afraid it,S sometimes the case of having to continue to press your case...until your GP finally 'gets it' and provides the correct treatment, as per all the guidelines (which few have read).
As I think I said before, GP's receive scant training on B12 deficiency and it's often the case of having to present (and re-present - 'cause it's a lot for them to take on board in the short appointment times allotted) information and evidence to help them to help you. Frustrating I know, but I'm afraid that that's the best way to...finally...get the treatment you need 😬.
About it being able to print...perhaps you could copy and paste the necessary information into a word document and email to your GP (as a word document or PDF)?
Or take your phone and let them read it (if you get a face to face appointment and they need further 'persuasion' to treat you?
BSR guidelines suggest that all those with Lupus are at increased risk of coronavirus and should be self-isolating or shielding. Risk is categorised (1-3), three being the highest. I suspect that you would be in risk category 1 (assuming you're not taking steroids - and based on not currently taking immunosuppressants).
So...you may not be housebound in a physical incapacity sense...but you should be taking extra precautions to protect against catching CV.
I can understand the current difficulty of their sending someone to your house to give you your B12 injection but Ceri, I can't stress how important it is for you to get this treatment.
You've said elsewhere that you don't really want to ask someone to take you to the surgery...and I can understand that. However, to be honest, this is one time where you do need to ask for help. Perhaps your friends (who you used to work with) or your brother-in-law can help again.
Many people do not understand that this is not a simple vitamin that you can wait for or do without. I have to be blunt here and say that the longer treatment is delayed the worse your health will get. And the greater the chance that neurological symptoms will evolve into permanent neurological damage.
I'm not saying this to frighten you - I'm just trying to help you see how very important this is and give you that extra bit of courage and determination to ask for help so you can get the treatment you so desperately need.
Have tried advocacy and they are the only charity that haven't been helpful. Which is incredibly disappointing to say, as I have heard many good things from them. The local branch is in Mold, Flintshire, Wales.
It might also be woth noting they are investigating me for possible autism. The refferal was supposed to go through last May from GP, however, due to admin errors etc IAS, didn't recieve it until July 1st, 2019. I was told it would be approx 28 weeks wait and I sked be put on the cancellation list. I phoned a number of times throught he summer to check for cancellations there wasn't any - supposedly. Autumn 2019 onwards, things went to hell and didn't have time to check. A few weeks' back (seemed long before coronacrap was big news, but not sure with how 2020 has been - for all of us!) and I was told it was a 13 month wait atleasat. I explained all of the above and was told, no its 13 moths and I was not on cancelllation list due to that being reserved for those in cris on on the verge of crisis (she gave the example of at risk of redundancy). Then, technically, I have been in crisis since beginning of March 2019 - she seemed surprised as I explained my situation for the millionth time - this was after I had to phone South Wales as no one ever answers the phone in North Wales! Surprise, surprise. I am still none the wiser as to what is happening and is YET ANOTHER failure that I have endured and been subjected to.
Ceri - in addition to social services, there are several different charities that delivery advocacy services. If one hasn't worked for you, pease try another.
Suggest you contact social services first. Their health advocates are very highly trained (perhaps in a way not possible with some other charities, who invariably operate on very tight budgets).
It's tough and it's hard work I know but sometimes it's a matter of finding the right advocate for you. As with everything, there will be good...and there will be not so good!
Please keep trying...if you find the right one for you it will pay dividends and make your life so much easier.
Yes, had the first B12 injection booked for the Friday after seeing neurologist on the Tuesday of that week. So was due to see neurologist on March 17th and first B12 injection on Friday March 20th and GP left a note to nurses to contact/arrange multiple B12 injections each week for the next couple of weeks. This was arranged on the Friday before which was March 13th.
Unfortunately, this all coincided with when mass panic started in this country in regards to coronavirus and everyone was out buying 200 loo rolls to help with a respiratory virus - yes, because loo roll is so useful for respiratory infections! And good luck trying to get any use from the loo rolls with a years' supply of pasta, rendering the loo redundant.
With the situation, in the afternoon of March 16th, I checked if the neurology appt was still going ahead. It was, but understandly this could change last minuute. I had the crash that evening.
After, much fuss my sisters OH dropped me off for the neurology appt. It had been cancelled last min due to consultant self isolating - understandbaly so, I at this point, I did not expect it happen anyway. Later on, phoned to re-arrange, expecting it to be ages away, they had a slot for Friday morning (March 13th) with a different consultant. I took it.
I attended, he diagnosed PPPD (still unsure and not had time/energy to read through and get my head around yet another thing), diagnosed migraines with aura - just thought they wre bad headaches, that's how much I just get on with things, said he wanted to arrange physio to help 're-wire' my brain with body movement - unsure about this, will know more when I get the clinic letter through, he said me mental health is having an affect on my physical health - oh really? I never knew (sarcasm) please trying telling that NWMHT, who have rejected no fewer than 10 referrals since May 2019, as apparently, I am absolutely ok and my mental health is perfect - yeah. Discussing B12, he wanted injections starting asap and at x3 per week and then further indtrction that I can't quite remember. He said it should explain some of what's going on and wants them starting as to eliminate/confirm that is the issue for symptoms. He has ordered a brain CT scan with contrast dye which i am very nervous of. He wanted MRI, but I have only ever had one, with right wrist, also with dye, and they had to stop that halfway through as I was going into a panic attack, although after reassurance, being put back in the right position and nurses talking to me through the headphones, reassuring me, I got through it.
Also, on that point, at a following private pyschotherapy session, it came to light one reason why I hate lying down (particularly on my back) in medical settings. It's due to a childhood accident that I have no memory of, just the scar on my eyelid, but my body must remember it. I've always been told that I was held down by anywhere between 2 and 6 people (the number seems to change every time the story has been told over the years' and I was about 4, it wouldn't have taken 6 people!) to hold me down whilst my eyelide was stitched back on. This was in the early 90s, so I dare say things are different now. Regardless, I don't remember it, but my body must, which would explain why I hate lying down in medical places (seem alright on my front) and why I always have to feel in control -well, actially I have to be in control at all times of every situation, people cannot be trusted - I have to know where the door and exit is and know I have control and can stop whatever is going on at any time. I was due for EMDR therapy in regards to this with Royal Derby hospital and was all booked in, but the consultant (not the therapsit) decided against it.
I think I must have misunderstood Ceri...thought your neuro appointment had been cancelled and that you were unable to get another.
Your neurologist is of the opinion that some of your symptoms are indeed due to B12 deficiency - and has agreed the very other day injections. It may take some time for the post consultation letter to arrive (especially under current circumstance) but you can update your GP verbally and use that to try and get the intensive treatment you so clearly need.
About the PPPD - persistent postural-perceptual dizziness. This can be caused by B12 deficiency (B12 deficiency as a cause is often missed). If it is, then having treatment will cure it. If not, then vestibular rehabilitation exercises via physiotherapy will help. Best to wait and see if the B12 works and then ask for a physio referral, if necessary (given it several months - perhaps consider when this CV crisis has abated somewhat, if necessary).
- GPs at the surgery are only seeing respiratory patients face2face, the rest is phone consultations
- They have said I can have the injections, I just need to phone and book in with a nurse to arrange (x3 per week for 2 weeks, follwed by one every 2 to 3 months - GP instructions, unsure about neurologist instructions).
- Problem is - as I have said - I can't get there. My ony way is walk the 6 mile road trip - I don't mind in the nice spring weather, however, I am very unsteady of my feet , very wobbly, very shaky, limbs tingle an get weak, smallest of movements and everything spins, feet feel 'spongy' and legs give way alot at the knees as my body is getting weaker by the day.
- No buses through the village due to corna, can't afford taxi (about 20 round trip) and ahve no one that will take me. Actually have friends (a couple) who I used to work with who would take me, but they live about 18 miles away and it's not fair on them. They have already picked me up and taken me for stitches removal last week - couldn't have B12 injection as apparently there was no nurse there at all and the dressings team "can't give injections".
- Also, been denied PIP, a big fat 0 points, despite over 100 pages of evidence sent to them, which only arrived a week before the date on the decision letter, so I highly doubt this has even been looked at, let alon read and taken into consideration - CAB have drafted me a mandatory reconsideration letter.
- They will not get a district nurse out to me as I am not housebound and they are - understandably - rushed off their feet. All 700,000 NHS voluteers are for NHS England ONLY, so have n help there either.
- They said I can have the injections, I just need to make my way there myself - which I can't. and their attitude is 'tough'.
- If I had a car, I wouldn't care how many times, they'd want to drive up and down to there and would just go as and when needed, no fuss. But I can't and funnily enough, slamming on in the overtaking lane on busy dual carriageway, towards the end of rush hour is not my idea of fun!
- I would be more than happy to stab myself with the needle. It doesn't remotely phase me. But I cannot get there.
I am very unsteady of my feet , very wobbly, very shaky, limbs tingle an get weak, smallest of movements and everything spins, feet feel 'spongy' and legs give way alot at the knees as my body is getting weaker by the day.
Sorry to keep banging on about this Ceri but...those symptoms are all well recognised symptoms of advanced B12 deficiency. You are getting weaker by the day...treatment cannot...should not...be delayed any longer.
I recognise and understand the problems you have getting to the surgery but...to be blunt...you must find a way...asking for help is nothing to be embarrassed about...so please do keep trying.
Then can I please give you me GP surgery's phone number and you speak to them? I am getting NOWHERE. I have tried and tried and tried. Not BCUHB don't give a shit. I cannot put it any simpler or clearer than that.
Ceri...my understanding is that they've offered to start the B12 injections...if you can get to the surgery. That would be the time to discuss your ongoing treatment plan (perhaps using the information I've given above)?
I think it's vitally important that you find a way I’ve getting to the surgery, despite the difficulties that entails. They are offering to start your treatment so unfortunately, that ball is now in your court. I'm sorry if that sounds a bit tough and blunt, but failing to go for treatment that is offered is, in fact, a refusal of treatment. So in saying this, I'm trying to help rather than criticise...it's just the way this 'works'. And I'm sorry for that.
I'm not qualified to act as a health advocate and, in addition, due to data protection regulations, your surgery would be unable to speak to me about your medical condition or treatment. If you have a family member or friend that could go along with you, that may help (GP's tend to listen more and act differently when there is a witness in the room - shocking, but true).
How is it me refusing treatment, when it's not my fault I don't have a car due to crash I didn't cause or ask for? And I don't have any money!!
How the hell is that my fault?
How the hell is it my fault that, due to devolution, there are no 700,000 NHS volunteers are for NHHS England only? How is it my faluy that I can't even get a bus down there due to coronavirus?
Yet, I am the one suffering and fighting like hell for the most basic of healthcare.
Ceri. Please don't misunderstand me. I am most certainly not saying that this is your fault. Perhaps I didn't express it well but I am simply advising how the systems 'works' and trying to offer ways you can make that system work for you.
Unfortunately (and rightly or wrongly) GP's practices have no remit and are under no obligation to provide transport or home visits for those who are unable to visit the surgery due to transport issues. That's just the way it is...it's not their 'fault'...and neither is it yours. It's just the way things are!
As to your reply below...I understand that you are reluctant to ask for help from the people who live 18 miles away...but you say that they’d be happy to do that...so please, please, do ask.
Keep in mind that it would likely be just once, not every other day for injections. Many GP's are providing training for people so that they can do their own injections...and this would be a perfect solution for you. I'm sure that the surgery will not want you having to visit every other day, for their own protection, for your protection...and to make best use of resources in the current circumstances. So, if,you can get there just the once to get treatment started...
I'm sorry that I can't fix your transport and car issues, I'm sorry that I can't come and take you myself, I'm sorry that everything is such a struggle for you.
It's very frustrating sitting here in my lounge just sending words. I know how difficult this is for you (I've been there to). Please dig deep and ask for help.
Here's another thought...have you thought of ringing social services to ask if they do a volunteer transport service. Many do and it would be another potential way of solving your current transport difficulties.
Please don't give up...dig deep...please ask for help. I'm sure your friends would be quite distraught if they knew how much you needed help but were too embarrassed to ask (I know I would be if it was one of my friends). It's not a matter of appearing 'mean' or being 'fair', it’s a matter of necessity. And I'm sure they’d understand that xx
Thank you so much for those words. I found myself leaning forwards to hug you - from infront of my tablet!
Social services - what do they do? How can I get in touch? How can the help?
All i know about social services is that as a child, you were to be scared of them - terrified of them actually.
Just to add - awaitng GP phonecall later on this afternoon in regards to B12, getting there once and once only and asking to be taught how to self administer and have these delivered to my house. Fingers crossed.
Look up the telephone number of your local social service on the internet and just ask the person on the switchboard if they run a volunteer transport system for GP and hospital visits. If they do, they'll put you through to the right people.
Social service can be a force for good too, so please don't let past experience stop you from contacting them right now 😉. But I know what you mean - years ago they were held up as interfering 'baddies'...and those perceptions are difficult to shake off.
Another option is to ring the citizens advice bureau and ask if they can put you through to any volunteer transport services - they often can.
Also - in our area the local community centre has set up support services for those in need. Might also be worth checking if there's anything like that near where you live?
I'm hugging you from my iPad too 🥰...what a shame that hugging is now banned...but not here, thank goodness! So, sending hugs - and more hugs xx
Ihave asked for help, probably about 100 times over for local people - including sister, but other OH is a control freak. He even left me stranded at Glan Clwyd when I was there for neurology appt I started walking back.
The couple who live 18 miles away are more than happy, but I feel so mean asking them to come all this way, just to tke me 3miles down the road - and it wouldn't be just once, it would be each other day, for a very time! That is not fair. People near by, don't want to know.
Money doesn't bring happiness, but it can solves a whole load of problems! This is why it is vital for me to have a car - I didn't slam on in the overtaking lane of the A55 ofn purpose. The two that did drove off and it cost me my beloved £5k car and I have no way of getting a new car as I have no money, no way of getting finance and can't work until disease is undercontrol, which is never going to happen because I have NO HEALTHCARE.
Pack supplies and slowly walk. Stop if the heart starts to hurt - stop to rest and then keep going. Crawl if you have to. What Foggy has been telling you is absolutely accurate. You need those injections to remain healthy. My injections were delayed and I've suffered some permanent neurolgical consequences.
You must find a way. This is you're only task right now. Leave other issues to the side.
That's awful!! What did the medical team say in regards to the permanent issues that they havea caused you to suffer from? I hope you are coping ok with that. It's just not fair.
Only time will tell wiwth me. I hope, seriously hope, nothing is permament.
I have learned to swallow my pride and am accepting help - as difficult as it is for me! I am far too stubborn. If the shoe was on the other foot though, I'd be the first saying, here take this/use this, accept the help, it's there. I'm a walking contradiction! - and not afraid to admit it
You're way better off not knowing most the gruesome details - but it is permanent neurological damage with me. It was totally avoidable - all Doctors had to do was listen.
Get that stuff into you ! Most people escape this unscathed with timely treatment.
This is clichhe as hell, but I am so sorry you have had to deal wiith that, and have to for life. It seems there needs to be training for healthcare professionals in regards to B12 as it seems so overlooked and brushed off as nothing. I wish you all the best, Freckle, I really do x
Thanks for that Ceri. and I couldn't agree more. There are diagnostic overshadowing issues involved too which are harder to overcome as it's due to individual and cultural bigotries. There's plenty of research and proof about this - so hopefully education will follow in this area too.
The lin for vulnerable people is for NHS England only. No such support for Wales - unsurprisingly.
And according to GP, I am not remotely 'at risk' or 'culnerable' despite SLE diagnosis in October 2019, disease is actiave and untreated, no rheumatologist (and not one in sight, in the pipeline nor awaiting appointment - I HAVE NO ACESS WHATSOEVER TO RHEUMATOLOGY -ANYWHERE!), permanent leukopenia (low white cell count) and permament neutropenia (low neutrophil count, the part of white cells that fight infection).
Despite all that, according to GP I am not in the vulnerable category and not 'at risk' at all.
Which as we all know is complete bull and goes against not only, all the hardwork of Lupus UK, but also NRAS (as I posted earlier in the week) and have given a detailed document to GP surgery referencing why GP is wrong an making them look at the overwhelming evidence that shows they are wrong. The response? "That is NHS England. I live in Wales, I practive within NHS Wales, that is all I cared about and that is what imatters. NHS England is NHS England, but we are NHS Wales and this is what NHS Wales says". Exact quote. SHe failed to acknowledge NHS Wales, and herself, are going against NRAS and Lupus UK.
I know that the rheumatology situation is both frustrating for you and unacceptable.
For now, it would be better to just focus with your GP on getting treatment for your B12 deficiency. This is the most urgent issue. Treatment will bring big improvements to your health and put you in a better position to deal with everything else.
Frustrating as it is, you'll probably have to wait for the out of area referral to be 'processed' before anything happens with a rheumatology appointment. So 'park' that for now and deal with what can be immediately progressed to improve your health.
It's so damn frustrating Ceri but...one step at a time...one day at a time 🤷♀️😉.
And again - I have phone GP, several times. Think I have spoken to GP over the phone everyday this week and towards the end of the previous week. They don't want to know and will not help. I HAVE TRIED MANY, MANY TIMES OVER. I get more sense out of talking to a brickwall. So no, I will not pone GP again, just to told the same thing over and have the ohone put down onme - yes, this has happened, by nurses when in crisis and in floods of tears down the phone and by GP this week. It is now BEYOND GP. I cannot contact GP in regards to this - or any of what has gone on.
I can only have the injection if I can get there - which I cannot.
This all needs esculating far, far higher than GP and have purposely st this post, and the one I made about needing to end devolution, open for anyone to read. This HAS to be brought to parliaments attention. These failures are not ok. At all. And it has NOTHING TO DO WITH CORONAVIRUS, THAT IS NOW BEING USED AS AN EXCUSE TO NOT GIVE HEALTHCARE.
No one, absolutely no one, should have to go through what I have - not just in terms with healthcare, but with being madeillegally redundant by being forced on a conference call on the one sick day I took (March 15th, 2019), when battling pnuemonia with pluerisy, never been so ill in my life, still on antibiotics, steroids the follwoing week and codiene for a month, should've been in hospital reallt, because that would've been safe, but I am too amn stubborn and as the running theme incompetent GPs. I was told my last working day was the following Friday, March 22nd, no redundancy pay, nothing (with them 3 and a half years at this point), forcing me back to work the next day, to earn my final £300 (worked Friday-Monday), only to have a 3 min warning to get on another last min conference call of my 'final' day, an hour and a half before the end of the shift and told now 'at risk' of redundancy and now in 'group consultaton', I didn't have the energy to tell them what for. Lived day to day, not knowin what the hell was going on or whether I had a job from one day to the next.
Rountine blood test in June, showed a sudden drop in white cell count - and was flagged with haemotology before it went back to GP (white cell 2.2, neutrophil 0.6), over the next few months, multiple blood tests for alsorts - including ANA in July, which is where GP had enough and wanted haematology to take charge as this was beyond her remit (fair enough as they are expected to know absolutely everything, and this is why there are specialists), haemotolgy referred to rheumatology due to ANA results - which all I knew was positive for ANA and ENA, had no idea what it meant and no one would/could explain.
It was a fight to see the one rheumatologist at Glan Clwyd - haematologist wanted me to see rheumy wthin two months, or he was going to carry out lumbar puncture - which terrified me! Fight and a half later, due to no priority on the referral from GP and no contact details for rheumatologist and I had no power as I am just the patient, not the consultant who can expedite appointements. Haematology secretary sorted it for me - haematology experience within BCUHB, excellent! October 3rd, he tells me hightly suspects SLE, just waiting on one more test to come through, the follwoing Tuesday get a call from rheumatology nrse wanting me in on that Friday, SLE confirmed. The rest I have shared in other posts.
October 25th, made redundant and in my absence, whilst driving from Glan Clwyd to Chester where training was taking place. I was lost and all over the place. I don't even remember going oto the job centre that afternoon - JC are brill, too. Nov 3rd, marked my dad's anniversary and I have a very set routine that day out of respect for my dad, Nov 5th I start college and bonfire night is a very poinent time for me, have alwats enjoyed it, but now I mark as my dad's night. November 7th, yet again I am rejected by NWMHT, they call the police 'out of concern' - first tme for everything! - and I am blue lighted and boxed in by 3 cop cars on the way back from 'my place' in a secluded natural beauty part of Wales. Still, trying to get my head around everything, I am not remotely on ths planet and having trouble with rheumatology.
I am refused an appt with rheumatology in January, which also conincides with when a 6 week trial of hydroxychloroquine was due to run out - and with no way of getting any more.
I am unwell over xmas and NY, very weak, struggling with breathing, chest pain and fatigue.
I become a member of Lupus UK around NY. Brilliant! I order all Lupus UK material and educate myself and put together a document for rheumatologiist in referrence to Lupus UK material and if it means anything to myself, especially if something struck a cord with symptoms.
February, within one week I have Monday dermatology appt, Tuesday college and occupational therapy (at Countess, I see physio there in regars to right wrist injury and she was shocked at having no support, so wanted to do everything she could to get help and support there - brill!), Weds, JC for CareersWales, ReAct, Friday rheumatology - I had moved PIP assessment from that Tuesday as well and the following Monday a radiololgy appt, for something completely unrelated - but was a hell of a lot of hardwork, as this was orginally put in last min, an hour after dermatology, which was at a different hospital. I also have MOT, brakes done on car, PIP assessment, drs appts, nurse appt and opticians appts that month.
At rheumatology appt, all my 6 weeks' of effort and prep for the appt was pointless and I didn't even get a fraction of the same respect back. No consulttion took place, no questions answered or re-assurance, no run through of bloodwork, nothing. He discharged me and told me to go to GP to ask for referral to Chester (Countess). He also insisted that I could get hydroxychloroquine through GP - which you cannot. Eventually did, but it seemed to affcet my eyes, so stopped taking it. GP was not happy about himm asking for her to make a referral to Chester and felt this should be on him. She was horrified that he had discharged me without any follow up appt with either himself or with another rheumatologist and insisted that I cannot be without a rheumatologisst as I am diagnosed SLE and would be under hospital care for the rest of my life - but here we are. Heard nothing from referral so I queried. GP refused to phone or even get in touch/chase up the referral (which didn't even get sent off for a further 3 weeks. So later that day, I phone outpatients manager from Glan Clwyd who phone Countess and they told her, they had rejected me due to being 'out of area' - despite Countess being 12 miles from me and Glan Clwyd 22 miles, but NHS Wales and NHS England and different Healthbaor/Trust. I wouldn't let this go with GP, GP called me in after hours on the Friday evening and filled in IPFR, on March 13th. The rest I have already told.
And that is only a snippet of the last 12 months, there is also going through ACAS early conciliation, PIP, car crash, neurology, B12 stuff, hypermoblity still not on records despite so many consultants and physios mentioned this since wrwist injury August 2019. Always known I've had, but never known what is means etc. Knee caps have never been 'fixed' and have many joints that go past their normal range of motion, ganglyion cyst on left wrist (rheumatology diagnosed Oct 2019, been there since around last August) which pressing against nerve and causes pain, meaning neither of my wrists are functional - atleast a 10 month wait to see orthopaedics at Glan Clwyd, waiting on respiratory medicine, lung function test - even the basic ones carried out at GP practice, no one give two hoots about chest pain and breathlessness, plus issues with the human race and oh ofcourse, who could forget, coronacrap.
Throughout all this, I have also been refused copies of bloodwork, I only have the number I do, because I remember number or have asked outright (in regards B12 evels) and noted them down during a consultation.
No one. Absolutely no one, should have to go through even a fraction of what I have and I am still standing. Why I don't know. I don't wish to. And with everything, I wish to never wake up - this has been like this for months. It gets worse as the days go on. I cannot stand this life!
Sorry, one more thing foggyme, what are your thoughts on the 3x B12 injections for 2 weeks, then 1 every 2 or 3 months? Deos this seem sufficient? Are improvements quick or take a long while to feel, both physically and mentally?
Ceri - lots of replies to go through...starting here and will reply where I can...but have to be fairly brief so apologies if some replies I'm going to leave sound 'short', by necessity 😉.
In short...no, that's not sufficient!
Here's what the BNF says about treatment...I've put the regime you should be on in bold)...
Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency
By intramuscular injection
For Adult
1 mg every 2–3 months.
Pernicious anaemia and other macrocytic anaemias without neurological involvement
By intramuscular injection
For Adult
Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 2–3 months.
Pernicious anaemia and other macrocytic anaemias with neurological involvement
By intramuscular injection
For Adult
Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months
The loading doses followed by 2-3 monthly injections is for those who do not have neurological symptoms.
Yo do, so should be on every other day injections until no further improvement (the bit in bold).
Somethings to be aware of...
1) Only 15% of those with B12 deficiency have macrocyclic anaemia, you don't have to have this to get treatment - it's the B12 treatment that prevents it!
2) Treatment guidelines refer to the treatment of Pernicious Anaemia (PA) and many GP's think this means that there must be a PA diagnosis to give this regime. That is not so because...
3) There is no gold standard test for PA - 40-60% of those with PA test negative for IF antibodies. Many have what's called antibody negative PA. Whether you have PA or not is therefore a moot point.
4) some GP's may say...'ah ha, but you don't have PA so don't need that treatment regime'. That's a moot point. The treatment for PA is treatment for the B12 deficiency it causes. Ergo, the treatment for B12 deficiency is the same - whatever the cause (and there are many).
Telling you this so that you are aware of some of the 'impediments' to getting intensive treatment...and can argue your case, if necessary.
About timeframe for improvement - difficult to say Ceri because we're all different and respond in different ways. Some feel great improvement after the loading doses, for other it can take longer - especially if the deficiency has been long standing, like yours. And different symptoms respond at different rates, neurological repair does take longer.
Also be aware - symptoms often feel as if they’re worse once treatment starts. Nobody knows why but it's suspected that the B12 starved cells and nerves have trouble interpreting new signals once repair starts. This does settle down as treatment commences. So please, if you do feel worse once the B12 injections commence - keep at it because stopping them would be the worst thing you could do.
Hi ceri, my daughter has pernicious anaemia, she had b12 injections 3 times a week for 2 weeks and is now on them once every 3 months, she seems to be ok on them. I am sorry that your not getting the help you so obviously need. Do you have a walk in centre near you? If so maybe they will be able to give your jab. I know you have said that you don’t want to call on your friends , but if that is your only option may be you should contact them to get you to were you need to be. If you don’t like speaking on the phone, could you face time kevin? Sorry can’t be more helpful. Wish you the best.
It's not that I don't want to ask friends, it is that I have asked or said if anyone is passing by would they mind taking me etc. No one will help. I was stranded at Glan Clwyd the day of neurology appt and no one would help. I am very disappointed in the human race. It is in me to help people, always has been - never leave anyone behind and always help. I know what it is like to have no one and be alone, so I will never let anyone be in that position. And I certinly would NEVER let anyone get to the point of crisis and beyond without helping. I couldn't do it. I have sat in the darkness with friends at all hours of the day, helped them through, picked them up and muddled through things together. I've got up in the middle of the night and driven to a friends' house or wherever they are, when they are in distress and helped them through - even if it is just sitting with them in their darkness. I would never let anyone go through what I have.
Nearest walk-in centre (I believe) is in the town over. I think it's 3 miles away but unsure. Have tried finding it and it's services they provide or how it works. I will try to find out.
A quick question, in regards to leukopenia and neutropenia, does this mean I should be on immunosurpresent meds? (I have no idea what this means)
Is there anyway white cell and neutrophil count can be improved (to atleast be in the bottom of the ranges)? Would this be through meds or through other natural ways?
Is hydroxychloroquine, supposed to bring these counts up? If so, I seem intolerant to it. So what next? What I supposed to do? Can these count be mproved or will they always be low - for whatever reason?
How can I sort leukopenia and neutropenia? None of this has been explained to.
As of October 2019, ANA positive (1/1280), ENA positivity, rheumatoid factor 107, positive for Anti RO, Anti-dsDNA negative. Unsure about anti LA or APS or if these have even been tested - although I am interested in regards to Sjorgens, which I suspect.
Can't remember anything else and it is only in the last couple of weeks that I have had those figures as for whatever rason, rheumatologist didn't CC me into the clinic report. I'm guessing this is just admin error though, as he always did CC me in - and without asking me, so big thimbs up from me there.
Can't answer as to what medications you should be on. Immunosuppressants are given when Lupus is active - but there seems to be a difference between being symptomatic and having active disease (i.e. not everyone who has Lupus needs to take immunosuppressants, even when having symptoms. It also depends on whether there is organ involvement. Only your doctors can decide if the are necessary for you).
WCC count and low neutrophils...my understanding is that many with Lupus have these. It doesn't in itself mean that you should be on immunosuppressants- other factors come into play.
Also - B12 deficiency can also affect WCC and neutrophil count. If B12 deficient is the cause, then treatment will help. If it's due to Lupus, then this will have to be managed by your rheumy (when you get one).
Some who can't tolerate hydroxychloroquine are able to tolerate mepacrine (a similar class of drug), so that's one option your rheumy may like to try (again, when you get one). These drugs are what's called immune regulators - they sort of 'manage' the immune system without suppressing it - one role being to alleviate symptoms and prevent progression to organ involvement.
Also note that (as you probably know), having low WCC and neutrophils puts you at greater risk of infection. So more reason to protect yourself from CV infection.
You're last point - not according to GP. According to GP and NHS Wales, am of no additional risk than any other person who is healthy and with no underlying conditions.
Incompent GPs seem to be common occurance.
In terms of rheuamtology, it is not a case of WHEN I see one, it i a case of IF I ever see one.
Also, it might be worth noting, that up until March 6th, I was on 100mg sertraline per day, had been since July 2019, previously citalopram, which I reactions with. Sertraline semed completely ineffective, I discussed this with GP on numerous occassions and then I just sat there and asked, what about other options - I don't agree with meds for mental health as it's imprtant to get to the root of the issues and work through, but still. She, very reluctantly, went through options - increasing the dose, going from 50mg to 100 mg last August did nothing, so what's the point? I had also missed a few doses in the last month to two months for whatver reason - stress, forget or jsut a 'what is the point?'
She mentioned mirtazapine - which I have been taking 15mg, per night since (haven't yet, I forgot. Not noticed a single difference, but when I take it, I am asleep within thte hour, which is amazing as - like all of us - I struggle with sleep. Neurologist said he wants this carrying on and mentioned it can help with somethng (something neurological related, can't remember what).
This drug is not on my repeat and a follow up was not booked, desipte this being absolutly necessary, I mentioned this, during a call with a different GP, who gave me another month to try whilst all the corona is happening, but still no follow up.
I notice no diffrence, only that I am asleep within the hour of taking it. Which reminds me, I shall now take it, and hopefully, sleep for a few hours.
I had an almost undetectable B12 and I ordered some solgar B12. The usual tablets are cyanocobalamin 50mcg and I had been taking 3 a day for months. The solgar ones are methylcobalamin 1000mcg and you take 1 a day. My B12 shot up like you wouldn't believe in the space of 3 months. They cost about £18 on amazon but well worth the money.
Hi, thank you for the reply, but unfortunately, I don't hvae £18 'spare'. If I did, I would use this for a taxi to get to GP surgery for much needed B12 injections. Also, I will never use Amazon. They do not pay their fair share of tax, don't treat their employees well and have foced many businesses uot of business because of the prices the can charge due to all their shortcuts on tax. Absolutely never.
On the phone right now to neurologist secretary - utterly useless. I phoned Walton Centre who said I have to phone his Glan Clwyd secretary to access the clinic letters - yay!!
And she just put the phone down on me. No letter has been typed up yet - I despearetly need this for PIP for mandatory reconsideration.
Nothing is on the system about B12 as nothing is written up.
She said I need to go back to GP and ask for them..... oh, I hadn't thought of that!
Back to square one.
What the hell do I do? GP won't do anything. Walton Centre secretary tells me to phone Glan Clwyd secretary, who is as useful as a chocolae firegaurd - I expect nothing less from Glan Clwyd.
So again, another phonecall, again got NOWHERE just more stress.
Oh and I also can't get prescriptions delivered due to not being elegible. Not that B12 injections are on my repeat, they are not.
Is 4 week suply of folate sufficient when starting intensive B12 injections? and hen should this be started? Straight away or a few day after the first injection?
here that is wise and caring. Maybe we can help more by letting you sit with these options until you can choose a way forward. I hope you can find something in this outpouring of care and concern. You have clearly explained each reason for rejecting suggestions offered. Time to stop and think. Put the enormous energy you have used writing all this into finding a first step. I hope you will find something you can do.
- Phoned Walton Centre secretary first thing, was told to phone his secretary at Glan Clwyd
- Neurologist secretary at Glan Clwyd said clinic report hadn't been written up yet - understandably so in the current climate. I do need this ASAP though for PIP manadatory recosideration and also for GP so I can finally get some much needed B12.
- Manager from Glan Clwyd/Walton Centres neurology is phoning me this afternoon for some unknown reason - I genuinely have no idea why, secretary just said so.
- Phoned GP surgery - for the 100th time - due yet another phone consulation with GP this afternoon.
- I have asked to visit the surgery once and once only and when their be taught how to self administer much needed B12 an asked for this to go on repeat and asking for B12 injections (and other prescriptions) to be delivered to my home address - even though I seem eligible to this.
GP receptionist, irritatingly put herslef down by saying 'I'm just a receptionist' Why do receptionists always do this? Don't put yourself down, you are the frontline of everythning, without you there is nothing. I always say this and receptionsists are so underappreciated and undervalued. It really grates on me. They matter so much and without them, there would be nothing! I always, always show my gratitude to receptionsists. Always. Same with retail workers (I used to be a sales rep myself before being made redundant - hint, any TV issues, I can help you out and get it sorted!).... look at the world we are living in, these are the very people along with frontline NHS holding this country up and keeping this country going. And so many say retail workers do not deserve £10/hour. And here we are in 2020 and these are the very people keeping this country moving, we are reliant on them and they are essential workers.
I have replied to PMs in regards to people's offer of help. I am a very proud (and stupidly stubborn) person, but I am learning I have to swallow my pride on this one.
- Point blank refusal to listen to any of Foggyme's oints or that B12 is VITAL for my physical and mental health.
- Point blank refusal to understand the effect this is having on both my physical and mental health and that B12 will help in EVERY way possible.
- Point blank refusal to acceot that neurologist has diagnosed PPPD and that this can be caused by B12 deficiency.
- Point bank refusal to listen to ANYTHING I would say.
- She said to arrive at 4.15pm today for B12 injection and said it is noot possible to teach how to self administer this in one session. She mentioned this is intermuscular (?) and in the arm. It has been mentioned to be in the thigh on here - any clarification on this please? I trust people on here far more. She said she cannot organised me to have needles and needle bin. She said cannot do anthing to have prescriptions delivered.
Any further help would be gratefull received, thank you
Hi, my daughter has always had her jabs in her arm. And why the hell can you not have your medication delivered? You can ring the pharmacy and get them to deliver. Is your pharmacy attached to your doctors? Thought prescriptions were free in wales?
Yes, got the pharmacy as named on all my prescriptions. I'll give the pharmacy a call, but will try it when they are not too busy, cos I feel bad. They are always so busy, never stop and with all this going on, someone asking them to be put down for home delivery isn't ideal or what they want to deal with.
Prescriptions are free in Wales, yes - but not sure about deliveries or eligibility for deliveries. Or if delivery services have changed with this pandemic going on. It's Rowlands, are they are very, very good. Always top quality service!
Apparently only housebound people can get them delivered for free. But i'll ask
You may not like her, but be pragmatic. Don't take her personally and let her do it. I hate my GP too - but unfortunately I have to deal with him to stay alive. Try to see it and them as an impersonal transaction.
Get there any way you can. You must rely on yourself. Youre living through an era with a rapidly changing set of social rules.
I only self inject when I absolutly have to. It's easy to break the little glass B12 red cordial thingi incorrectly and get the needles mixed up - and disposal of needles right now is a big issue. I've done it on lots of occasions because I live in a semi remote rural area in Australia - and I still manage to get into a muddle.
Apparently no one available to teach (understandable due to coronavirus and so many needing to self isolate).
Apparently it take more than one time to teach on how to do this. She is still saying I need to get there every other day. I cannot do this. If I could, I seriously would. I wouldn't be kicking up any fuss and would just go as and when they needed me to and as many times as they needed me to.
GP is not remotely interested in listnening to me about anything, particularly in regards to B12 - she wants neurologist letter, but this is currenyl not written up yeta dn understandably so, with all corona crisis.
Total denial/ignorance from GP of the importance of B12 - that I have only learned myself by being educated by all of you. She asked me why I wanted it, so started listing all the reasons given on this thread - she started talking over me to keep me quiet.
Any thoughts or help please? Either way, I am making my way to GP surgery for one B12 injection at 4.15pm today. Prpbably not going to be taught to self administer or anything.
Yet again, I am stuck. Total refusal to set up everything needed for self administering this at home.
I am so sorry, Ceri. It sounds like the neurologist is really thorough and wants to help you. I have a feeling it is vestibular rehabilitation that he is ordering. Just to offer hope: it can be very successful. I had it after a concussion. Yes, it is quite intensive. I just feel awful that you are not able to get the treatment you need right nos because of this dreadful pandemic.
Please try to understand you will get the therapy when the worst of this virus is over. I am happy to answers any questions you have.
Also, the neurologist must have his reasons for ordering the MRI. I couldn’t tolerate my MRI years ago either. But there have been changes in the machines and you may be able to get a machine that is wider and less confining. I will help share all things that help me to get through it. I think the neurologist is going to want the MRI.
Reach out when you need to.
You have accomplished a lot getting to the neurologist, and there is reason to be hopeful you will feel better. Are you seeing him again?
Thank you for your reply, Kay and very interesting. I just googled vestibular rehabilitation, and yes, this is what he is trying to sort - obviously, this will be afer the worst of thte pandemic is over, so guessing 3-6months away. It's a case of wait and see, I am just grateful for the proper care and treatment. I have access to one consultant who knows his stuff, is great with patients, gives time, answers questions and gives information and info to take away - brilliant! If only, I had access to rheumatologist!
What does vestibular rehabilitation involve? (I don't mind if you want to carry this over to PM) What is it for? Will the fact that just days earlier I smacked my head on the top of the steering wheel of my car in the crash?
He got me to go a few things, including walking in pigeon steps (very wobbly) and moving limbs etc, and asked me loads of questions.
It seems he has ordered the MRI afterall - scared and no, I'm affraid to admit it. But putting it out of my mind as this is some time away. When I had one on my wrist, local anaesthetic, followed by contrast dye was injected deep into my wrist (guided by xray), then for the MRI, I was lying on my front and my right hand, wrist and most of forearm was encolosed in a box and I went in head first. I would've quite liked a clock at the other end of the tube to take my mind off it and count through, but unfortunately there wasn't After the machine had gone around twice (it was loud for a while, then quitet, then started again), apparently thenI started fidgeting, breathing got deeper and wasn't ok. I felt a hand on my shoulder - it was one of the nurses. She put me back in the correct position, made sure I was ko and gave me reassurance and said it was half way through. This calmed me and during the fourth and final time of all the loud sounds, I was fairly calm.
How is brain MRI done? Is it just lying there? I'm shaking just thinking about this? How it the contrast administered or is this through IV, throughout the scan?
At most, I am size 12, so the space shouldn't be too much of an issue, but it really is so small and I have to have my exit sorted adn easily assessible. I am unsure as to why the scan is needed. I may phone closer to the time as and when Iget the appointment through - don't want to disturb them too much with so much going on. Unsure as to whether this will be done at Glan Clwyd or Walton Centre - if Walton Centre, I will have someone with me. If Glan Clwyd, I will go alone. Hopefully, I have a car at some point, but no idea how I am going to buy one.
In terms of follow up, as far as I am aware, there is a follow up after the scan, not sure about before.
Ceri - so pleased you have a good rapport with your neurologist. They treat some of the most serious effects of lupus. So, trust me, he has seen lots of lupus patients.
The vestibular training is kind of complicated. They do all this stuff to get your your brain to re-wire. I remember walking and looking at different lines on paper, moving my head and spotting on a treadmill and lots of other stuff. Physical therapists need extra training, I think, to do this.
When you are ready for the MRI - and I doubt the neurologist is going to relent with your lupus - I will help you to explore options. Thirty percent of patients are unable to complete an MRI. So don’t feel alone! Be honest with the neurologist and tell him of your past experience. He will help you. I got Xanax and was put in the MRI with a wide bore. I have regular brain MRIs now and do fine. You will too!
I am not sure what your question was about your head hitting the steering wheel. Did the neurologist comment?
I have only had CT with contrast once. It was a GI CT. They aren’t bad at all. The machine is open and goes fast. You should be fine.
Don’t hesitate to ask questions about the procedures. You want to solve the problems in advance.
Many people here have had these tests and can help you.
You seem to be headed in the right direction. I honestly wouldn’t be too concerned about waiting for your rheumatology appointment. It seems like most of your symptoms are neurological, and they would defer to the neurologist anyway. Your GP can monitor kidney, heart and liver function. So I think you are fine.
Hey, I wasn’t crazy about my neurologist at first. But he has really helped me a lot. Now I think he is great. You are on the right track. But you need the tests, unfortunately. Neurologists like MRIs!
In short, the reason why you want it because that’s the recommended treatment for those with proven B12 deficiency with neurotically symptoms (BNF, BSH, BMJ, NICE).
Simply state that you want treatment as per the guidelines to prevent you suffering irreversible neurological damage!!
GP surgeries give B12 IM in the arm because that’s the quickest and easiest place for them to give it (little taking off of clothes). It can also be given IM in the thigh (upper outer third - some call it the jean seam position). Thigh is recommended for those who self-inject because it's difficult to inject in the arm when only one hand is available!
It can also be given in the bum - but this is not recommended for those who self-inject because a) the sciatic nerve has to be avoided and b) it's difficult to twist around and self-inject in the right position). So - potentially dangerous for a non medic who self-injects B12.
As to the a sharps bin and needles and syringes to self-inject - well, some surgeries do provide those, so the answer is...she could if she wanted to (though Wales May have different guidelines and regulations). These are very cheap to but online (approx £10 for 100 injections worth). Bad that you should have to do this but may be a better alternative than trotting off to the surgery every other day?
As to teaching you to self inject - the rule of thumb is show one and do one. I may be being stupid here but...if someone is giving you your first injection, that person is available and could teach you at the same time! You could do the next one (and then you've been taught). You know Ceri, it's not rocket science...quite easy to teach...if there is a will for them to do that. Obviously, this would mean going twice...but at least it would fulfil their criteria of it needing more than one session (though under the circumstances I'd debate that because if they wanted to they could talk you through the process the first time and let you do your own injection. Plenty of people on other medications are taught to do their own IM injections (in the thigh) and many do IV injections to (though this takes a little more time to teach and is definitely not recommend for B12 injections - it's the principle!
So...I think I said before that you’re going to have to just keep at it and try to convince them to let you do these yourself - it's work and it shouldn’t be like that. Any GP who understands B12 deficiency would recognise the importance of getting the injections - and given the current difficulties, as I said before, many GP's are now teaching self-injections so that treatment is not held up or missed.
As to the every other day regime - just thinking that the six loading doses takes you through the first two weeks. They may have received the neurologists letter by then, in which case treatment can just continue every other day. Another option is to ask the neurologist to ring your GP and 'authorise' the intensive treatment regime (though this should not be necessary - your GP should be prescribing that regime without recourse to a neurologist!).
If you do end up having to go to the surgery every other day...could your sister's other half and your friend take it in turns...or perhaps you could arrange transport via a voluntary car service (as per previous discussions)? Another thought is that once they start seeing you every other day, they may well take a different view about teaching you to self inject. Perhaps there's a surgery nurse who is more accommodating (though they would,probably lay have to gain authorisation from said GP). Or is there another GP you could ask - some are more accommodating that others 🤷♀️.
If none if this works and they still refuse to treat you according to guidelines for your neuro symptoms, then the next step would to be put in a formal request, in writing. Use the arguments I gave you above. Ask for treatment according to the guidelines so as to prevent progression to neurological damage. At the end of the letter say that if they are unable to provide treatment according to the guidelines, then please can they provide medical evidence to support that decision (they won't be able to because there isn't any). This is an acceptable request in these days of evidence based practice! I know that this should not be necessary and it'll take more determination...and gritted teeth. But the value of doing this is that a formal letter has to be placed on your medical records (ask for this to be done if you have to write - and refer to the guidelines, which they will then have to read). And because your request is on the record, they will surely be aware that they are accountable and liable if you come to harm. That should sharpen their thinking - and should get you the treatment you desperately need (it's the thing that works for most people who struggle to get treatment).
Prescription - your GP can prescribe the B12 ampoules for injection but my understanding is that prescription delivery has to be arranged through the chemist. If they can't deliver, is there anyone who can pick up a once monthly prescription for you ?
Rushing to get this off in time Ceri - be brave - be determined - good luck xx
Hi Foggy, thank you again for you input and your detailed help. But I'm afraid, there's more. Please sit down when you're reading this as I can sense, even you are getting frustrated by the surgery (The Laurel's Surgery, Flint Health & Wellbeing Centre) - they deserve to be named and shame.
Had the firs B12 injection. However:
- Nurse very rude and wouldn't hear me out.
- I left a note with the url for this post and with instructions that ALL GPs and nurses MUST read and take it in
- She near enough refused to give it, when I started explaining why I needed it "yes, I know about B12". Evidently - not.
- I went on to try to explain the physcological effects. She refused to listen.
- I tried to explain that B12 can cause anger and frustration - point blank refusal to listen and asked/told me to leave
- I went on to try to explain about neurological symptoms and PPPD - she ignored and told me to get out - and this was before giving me the B12 injecion
- Point blank refusal to teach and GP has said they will not do this.
- Next is on Weds at 10.45am
- Refusal for every other day for a month
- Her attitude - she knows about B12 and I know nothing.... She clearly does not know about B12, has a shocking attitude as do the whole of that practice.
In short, the surgery are now refusing to talk and treat me.
I have demanded each and everyone of them, looks at this post and read the entire thread.
Had a call, whilst getting ready to go from someone from PALs at Glan Clwyd - who said she had been told to phone me from secretaries of Walton Centre neurologist. She said neurology letter should be ready by next Friday. I asked if neurologist could please contact GP surgery to give advice about B12 and re-iterate the importance of this and his diagnosis. SHe said, she'll rty ot do everything she can - which I believe her as she has been very helpful in regards to all the issues I have had - and I have no issues whatsoever in regards to neurology. He's second to none! Very thorough and explained everything and gave me information on PPPD (with everything, not had chance to read and take it in). He's brillaint and is the only consultant that has shown the respect back in regards to my prep for such appointments - and actally he went above and beyond!
What concerns me, is the PALs lady mentioned he's ordered MRI with contrast - I was under the understanding it was CT, which although I would dread and be a nervous wreck for, I could cope with. MRI is a whole other scale. She did say this would be some time away, which I said, understandably so with everything going on and no I wouldn't expect it within the next few weeks - who would?
Well a Ceri...I bet you know what I think of that! Utterly disgraceful.
Really sorry but I can't stay right now. MXT injection day and the usual MXT 'hangover' has caught up with me 😬. So I'm joining you in a lie down 🤷♀️. Usually lasts for 24 hours so scanty presence n the forum until return to usual blah state 🤣🤣🤣.
I’m sorry if this sounds harsh but I’m going to be real here. They don’t have time to sit and read through a thread like this, there’s no point demanding they read it. I doubt you were asked to leave and now refused to speak or see them for being calm. Ranting and raving at doctors and nurses won’t get you anywhere. I don’t even need to say there’s a global crisis going on, but just to put things into perspective, EVERYONES appointments and operations have been cancelled. All of us chronically ill are being ‘postponed’. Cancer patients are going without vital treatment and surgeries that could really help them. A bit of give and take here, we all need to work with each other. You managed to get to your appointment even though you said you couldn’t and got your treatment, I’m glad and I hope you can continue getting to appointments that are offered to you. Take a breather now and take care of yourself
There is a story of how I got there and you don't know the PM's I've had and am keeping people's privacy in that regard.
In short, I walked for a bus, it didn't turn up. Is a revised COVID-19 timetable, but that was right for last week not this week. I put up a post on the local village support group and someone kindly took me, waiting on the carpark and took me back. Very, very grateful.
And no, they were short with me, from arrival. Before even saying 'hello'. They are feed up with me phoning and asking for the correct treatment and have not taken kindly whatsoever to being told they have it wrong and me giving Foggyme's very insightful posts, messages and emails.
You don’t need to explain to me how you got there I’m just glad that you managed to. Just don’t want you causing yourself so much stress over it when you managed to get there in the end, there wasn’t any need to and that’s a positive. Like I said I hope you manage to get to your other appointments. They do get a lot of things wrong, I think we have all had experiences with that through our own journeys. They don’t know the complexity of these illnesses.
I don’t think they’d refuse to speak to you if things didn’t get heated but 🤷🏼♀️ if you’re polite and respectful it would give them no reason to. Take care
Also, depending the results of your tests, the neurologist may be able either get you on a priority list with rheumatology or, if necessary, come up with a treatment plan with them if your neuro symptoms are related to your lupus.
There have been many groups set up across the UK to help people in isolation or to get to medical appointments.
If you Google COVID-19 Mutual Aid groups you might find one that is near to you?
I appreciate that you are in rural Wales but my experience of rural areas means that communities come together. If you can't find an official Mutual Aid group I'm sure something has been set up in your area.
Perhaps call the local vicar or local county councillor. They will be aware of what help is available. They are there to help, please make use of them.
There are alot of people on here trying to help you.
What a great idea, happytulip. Ceri could really use these services. We have people all over the US who are eager to help too. I was joking around with my friend who is at risk that I picture her at home reading as she orders all these nice young people around. 😅
Happytulip - I don’t know Wales geography well enough, but it looks like there are a lot of mutual aid programs there. Wouldn’t you think the younger volunteers would be willing to drive thirty minutes to an hour if needed to help people? Many of those in isolation may live a ways from a hospital.
Yes and even if there isn't a mutual aid group in the area that Ceri lived in I am sure that the local church community or council will be able to help or sign post her to where she can get help.
Really hope your ok and managing to stay calm you’ve had a lot of excellent advice over the last 24 hours it’s good to see what a wonderful community we have. The NHS are fighting a war against Corona Virus it’s not Corona Crap they are putting there lives at risk for all of us. Thankfully you are managing to let us know how you feel and that’s good to talk. Hope you feel better soon xx
Thank you for this. Currently putting that way out of my mind though as this will be some time away - which understably, I get and understand. The MRI, I will worry about as and when a letter comes through in the coming months.
Yes it will probably be a long while off with everything else going on! definitely ask your gp when the time comes as it can help ease the anxiety hope you get sorted x
Sorry for not getting back to anyone, fatigue finally hit and only just made 'home college' this morning via Google Hangouts. Going through comments now.
It was yesterday, after a difficult journey of getting there - so grateful for the local village support group! Next one is tomorrow morning.
Made me giggle when she was giving it though. She was very rude and hett up, wouldn't let me speak, made me feel like a nuicence, didn't understand the importance of B12, especially considering the state of both my physical and mental health. Was very, very annoyed at me asking her if she knew about B12, its affects and how important it is "YES!" was the reply, so I started saying it in relation to my own health. "Leave!" followed by "This will hurt" .... 'no, I never feel injections, I would quite like to feel one, so there is some kind justification of 'sharp scratch'" "Not yet!".. Now!" 'was that it? didn't feel it.
Think she was annoyed that I didn't feel it - I genuinely never feel injections and therte is never a justification in the 'sharp scratch'. With the nurses' attitude, I was thinking she was trying on purpose for it to hurt - she even looked at me faceial expression whn she expected me to feel it - and didn't.
I'm happy you got your jab and I hope you'll be feeling much better after the loading doses are complete. I think it's best to just let the nurse get on with it and try to ignore her comments.
Thankfully, I've also got a pretty high pain threshold and don't feel the B12 jabs toooo much - but I do feel them! Take care and stay safe. xxxx
You mentioned the local support group. How did you find out about them and are you now on their books as someone who might need a bit of help during the pandemic?
It's a fb support group that someone has setup for the village to help and support everyone in the village in this pandemic. I'm part of a few of the support/update groups, but the village one is very, very helpful. The night of the clap for NHS and essentia workers, was incredible - hairs still stand on end just thinking about it
ALso, someone on their is doing prescription runs to the same pharmacy I use, so got in touch with them today, and any prescriptions, she's willing to pick up for me, very, very grateful
Thank you. In times of crisis though, all there is, is the darkest heavest path ahead, with no light, no even the candle in the distance, flickering in amongst all the surrounding storms, fighting to keep alight.
I am feeling calmer, now that I have sorted ESure (although there is still a fight and a half to go!), finally getting the B12 injections and from reassurances from all of you here and in regards to neurology, which I wasn't going to ask about until the letter arrives (should be end of next week), but it's been eating away at me.
I'm getting there no matter what as it is vital I get there. Learning to swallow my pride and very begrudgingly accepting help - it goes against everything in me! I am so grateful and all help will be paid back and more, not just financially either.
Unsure as to how long I should be having the loaded doses for - can't ask GP as they are still dismissing it and brushing it to one side. And neurologist, is understandably so, so busy. I did ask one of the secrataries if he could contact GP surgery, but totally understand if that's not possible. FoggyMe has been incredibe and is the reason I have the treatment I do, I am so grateful to her, I really am.
And happytulip , I know you like your positive posts, so huge apologies for all of this. The good, is the incredible community spirit and I wish media outlets would report on all the good going on up and down the country - but no, doom and gloom gets those all important clicks.
I'm also planning on help my niece with her maths over video call when things calm down a little. I already helped her out loads before the crisis here. I taught her the nine times table, how to do it (3 x 9, put third finger down, two finger on the left, 7 on the risht, so answer is 27 etc) and how to check the answer - both digits should add to 9. Only applicable upto 9 x 10, but every little helps. She went from really struggling, to top of the class, getting house points and the teacher asked her how she learned it all and so quick. Teacher was very impressed and got her to share with the whole class. Teacher didn't know those hints either. Good ripple effect. And finally, 20 years later, my like for maths, particularly, arithmetic, is finally coming to us
Ceri it sounds like you are doing a bit better, but take baby steps. You are spinning alot of plates and I fear if you take on too much then it may get on top of you. Take the time to rest.
Please do not apologise for the posts! Yes, I started the Positive Posting thing because I knew that we were going to be in for alot of doom and gloom and worry and concern. I just thought that by putting a few positive posts up would balance things out. But ultimately, this forum is about us helping each other navigate our lives with our health and medical problems. Although I would like to put my face in that Blue Cake that Chanpreet made!
If you were to look back at some of my posts when I joined the forum in 2016 you will see that I was far from able to see any positives at all. My life literally fell apart overnight. Lost my career, independence, health and fiance all in one go. It was like a domino effect and I was getting diagnosed with condition after condition, under 12 different specialist at 4 different hospitals.
I won't name them but certain members on here helped me pull through, they know who they are.
Now I am not saying that life is fantastic. My life hasn't panned out the way that I had hoped or planned. In fact I have had a thoroughly crappy day today with a temp, sweats, pain and various flare symptoms all because of my antibiotics. But I am now at the point where I can see a positive or try to find a solution to a problem. Before, I was like you, I couldn't see any light at all.
Sometimes I still slip into that dark place but so far I have managed to keep going. Because ultimately, that is all we can do.
Well done Ceri, keep going but please don't take on to much.
URGENT UPDATE - I have just had the second B12 injection.
They are refusing to give any more. They say that NHS Wales have said they are all being changed to tablets.
I cannot have this due to severity of symptoms, them ignoring it since July 2019, leukopenia, neutropnia, PPPD and the effects on my mental health. The practice dismiss all of this and STILL don't see the importance of B12.
I have phone Kevin in this regards.
Currently sat in a room, waiting for the practice manager, who is speaking with one of the GPs.
Sorry for the late replies, stress is wiping me out. In short, no. They were not interested in hearing me out as to why oral supplements are not suitable or anything.
They very begrudgingly gave me an appt on Friday, but I am to say no words, not even 'hi'.
Having low B12 and presenting with neurological symptoms should be enough for them to know that B12 injections are a must. But not for them.
The battles are too much and I have given up. As I said I know I don't matter. The GP surgery have even proven that. It seems that me getting B12 is as menial as swine for advice of a headache when all they need is paracetamol.
I phoned neurology secretary to ask if he could phone the surgery to tell them the importance of me having B12 injections and apologised a million times over as this is something a GP should know and do without the need to be told ans give the reasonings why. And especially in a time of pandemic when this is the last thing a consultant should be doing. This is basic GP care and shouldn't need instruction from a consultant!
I have well and truly given up. The bate with ESure is a tough one, too. I haven't got the energy.
Hi Ceri. Thanks for updating us, your cyber family.
Of course you matter (!!) and I'm glad to hear you've got another appointment for a B12 jab. As I said earlier, it's easier to take the line of least resistance to get what you want/need in these situations. Soooo, say nothing to the nurse, just let her get on with her job. You may have to bite your cheek (not for the pain!), but I know you can do it. Take care and let us know how you get on. xxx
I did, it was her that said that would be the last one (yesterday's) and said it would be oral supplements for now on - which it can't be. The answer was "well, that's what the doctor said" ... Then came the excuse that - apparently - the latest is they do not give B12 injections during this pandemic. I tried to explain that it has to has loading doses and oral supplements are not strong enough. This did not go down well at all.
You would think they'd know this as this is supposed.to be basic GP care. But no.
Hi. You are correct that oral B12 is not sufficient, at least during initial treatment, but FoggyMe is far more knowledgeable than me about this.
I'm due a 10 weekly jab of B12, which will take place at my Drs surgery next week. I've had a phone call to confirm that the procedure will take place, even though I have an NHS letter to say I'm in the 'shielding' group. The nurses will obviously take all the necessary precautions, but to say they've cancelled B12 jabs countrywide because of CV-19, is just not true!
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ahhhhhh, so good! And yes, womenkind too, I hear you there!
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