Neurologist appointment left me in peices

Hi all, today is a much better day for me. I didn't realise how low I had gotten since my Neurologist appointment. I had been on a steady decline ever since. I don't think some of them realise how fragile some people are and how rudeness can send someone to the darkest places. I was looking forward to my appointment to see her, it had taken 7 months and for me it was a step forward. As soon as I entered the office she asked my name and d.o.b.....normal. she then asked me about the pain and numbness which she kept speaking over me the whole time. I would try and explain the pains and she would talk over me. She then done some pushing and pulling tests with me, she was very frustrated with me as I couldnt do some of them, raising her voice and telling me to do things again. Then asked me to walk on my heels, I was anxious and upset at this point and misunderstood. She then said " do u know what heels are" it was ver humiliating. I asked roughly how long the wait for MRI was. She said " I dnt know you have been in pain for 7 months so what does it matter" any questions I went to ask was cut off with I DONT KNOW. I left there is tears and have only just become semi ok today. I feel bad for the other people that have to deal with her when they are at their most vonurable. Thank you all for helping me out, just needed to explain why I was so very down.

141 Replies

oldestnewest
  • Are you in the UK? If so, you need to contact the PALS office at the hospital and file an official complaint about your treatment. That is not acceptable and needs to be addressed.

    I do realise that you are very fragile and that it will be difficult for you to do perhaps but i'm sure your partner will support you.

  • Thank you, I hope I don't need to see her again as I will crumble. I will tell my partner about PALS. He was very angry. Yes I am in London. I won't say which hospital as I am sure there are some nice Neurologists there who do care. X

  • Maybe the admin people here can offer suggestions for you to be referred to.

  • Oh heck. My experience of neurologists hasn't been wonderful but yours really takes the biscuit. It really does knock the stuffing out of a person being treated in this way. This person sounds unfit for the job if she speaks to you like this. Have you got a nice GP you could tell and see what the clinical letter says perhaps? I'm glad you are out of the woods from this awful experience at least.

  • Thank you twtchytoes. I think her and my doctor are in competition to see who can break me the fastest! Hopefully I won't need to see her again, sorry you also had a bad experience. Ice cold people really shouldnt be in a position of "care" hope you are well, or well as can be x

  • I can't think how they became doctors rather than research professors or something where social skills weren't required required?

    So far I have been really fortunate not to have any totally unpleasant consultants and only two GPs - which is not bad going when you consider that I've moved house, GP and hospital three times in a year!

    My present neuro was charmingly dismissive the first time I saw her six months ago - pre primary Sjogrens diagnosis - and much less so the second time - ten days ago. But listening really isn't her strength and there are still things she has said that I feel are not strictly professional or even correct.

    But she's German and I think she gets away with quite a lot as supposed linguistic errors? And she smiles quite winningly and jokes which helps. She certainly hasn't been rude to me yet though - just somewhat insensitive.

    At least you know where you stand with such people - and it really is their problem and nothing to do with you of course. But that's not very consoling for you. Shame to have landed two doctors of this ilk. Have you got a supportive rheumy perhaps?

  • Three times in one year! Thats a lot, I hope you are settled now. I have not been diagnosed yet and all my bloods show is inflamation, lack of vitamin D and anemia. I feel like the inflammation may be in my lungs because my chest is so bad. Nobody wants a bad diagnosis, but at this point I just need to know something so they know what medication will help. I have pretty much gotten used to my legs being numb, pins and needles or pain, but the chest thing is a bit too much. Also I am sure my workplace thinks I am sometimes telling lies because one minute I am laughing and the next I am in pain. I don't think my Neurologist went to charm school, more like harm school x thanks for your reply TwitchyToes x

  • No worries - I really feel for you. I do know a bit about RA, having been misdiagnosed with it five years ago - and this can also cause lung problems and, similarly to Lupus it can start with anaemia.

    As can the disease I have recently been rediagosed with - primary Sjogrens. Mine started in this way too but also affected my hands and wrists which is a hallmark of RA usually (but not always). RA and Sjogrens are more often diagnosed as seronegative than Lupus.

    And Sjogrens can affect the peripheral nervous system long before it affects the eyes and mouth for some. In fact, as with Lupus and Vasculitis, some people present to neurology first. In which case it's important to have a good neuro who knows their stuff!

    I suggest you regather and then prepare to fight your corner with all your night and mane if you have to. I hope you don't of course. X

  • Thank you twitchytoes, I think I need to show my partner this site, there are so many things we have not thought of and know nothing about. My chest pain is definately getting worse and is at most times unbearable. Tonight it seems to be giving me the evening off. No suggestion has been made as to what they are scanning for with the MRI and EMG/NCS. the only info we have is from websites. We hoped the neurologist would tell us what they are looking for. When we asked her she said she doesnt know what is wrong with me. I know she doesn't, I just wanted a clue as to what is wrong. Me and my partner assume lupus or MS because of my symthoms. I think you are right and we may need to fight. X

  • I think the investigations should include a lumbar puncture if you can face it and want to rule in or out MS.

    This procedure was fairly key for me but I don't have MS - just a very MS- like presentation of Sjogrens Syndrome (a rheumatic disease). My blood shows up for a different disease now called Scleroderma - which can also cause lung problems. It's all horribly complex to try to get your head round at this stage I know - but I recommend you ask to be referred to a rheumatologist if you haven't already. I wish you the very best of luck. And I wouldn't write your uncaring neuro off yet though - they might have no manners or empathy but still be astute at clinical stuff.

    Make sure you get copies of your blood results as this will help you to make your case if you have to. Also make sure your B12 levels are really good and if you eat gluten now then get yourself tested for Coeliacs disease. And most of all trust your instincts all the way! X

  • Thank you twitchytoes. I think I need to have a think and ask for what I want because they wont say what they are lookin for. Maybe they don't know either. The reason MS came to mind is because I had an electric shock feeling like being tazered in the back, also sometimes when drink it feels like something is in my throat. So its those two things that made may say perhaps MS but the other stuff mimics Lupus. Also I will look into sjogrens syndrome. I use google to search my symthoms, I dont know if that is wise or not x

  • Googling can be okay if you know what you are looking for and use only reputable sites. But I have found it best to use the information charities of each disease gives out. For Lupus this would be this charity, Lupus UK. For Sjogrens it would be the British Sjogrens Syndrome Assocation, for Vasulitis look on VUK and for RA look at NRAS.

    I really wouldn't assume that zaps and vibrations etc relate only to MS. I've had these often for years as part of my Sjogrens related small fibre neuropathy.

    Pernicious Anaemia (B12 deficiency) can cause all these symptoms and injections of B12 would resolve this for you. This is why I said that you should get copies of your blood test results if you can - and once you know your serum B12 levels I would certainly ask about the correct levels on the Pernicious Anaemia Society's HealthUnlocked. With your symptoms and Anaemia I'd say this would be a strong contender - but then I'm not a doctor!!

  • Thank you twitchytoes, my doctor didnt mention my b12 levels, I just started taking it because I couldn't stay awake, I am always exhausted no matter how much sleep I get. will look out for these charity sites

    I really can't wait for a diagnosis so I can then stop searching for answers as to what is wrong. My poor partner sees me twitching and yelping in pain, poor guy. You never know what life is going to throw at you. And I am one of the lucky ones still on my feet. I wish I could get better and put time into helping people x

  • The point is, if you had PA the low B12 would not be because you aren't getting B12 in your diet - it is because you are unable to absorb it in the stomach. That is why it is treated with injections - direct delivery!

  • I can relate entirely. It has taken me six years to get the right diagnosis and even now I'm still being passed from neurology to rheumatology and back again, as my symptoms relapse and remit while others worsen. Even with a proper diagnosis life can be very complex and frustrating with autoimmunity!

  • Was my Neurologist that was horrible. My Reumotologist wanted me referred to Neurologist to get the MRI. I saw the Reumotologist just once. They said MRI then back to them i 3 months. As for my Neurologist i cannot deal with her again. When I rang up her department to see if they had my referal letter, the reception told me it had been sitting on her desk for two weeks.... this was an expedited referal

  • Include THAT in the complaint too...

  • Shocking!

  • Seems to be the week for bad tempered people on the forums and also in the clinics - someone else was told by her rheumy she should be grateful she isn't as ill as he is with his diabetes! He basically told her to get a life and do some exercise...

  • Very low vit D can do some VERY strange things and you should be on high dose supplementation just to take that out of the equation. It is also a common finding in autoimmune disorders - but that doesn't alter it should be being dealt with. The recognised approach nowadays is 60,000 IU per week, either as a single dose or as 3x 20,000 IU . And that isn't rocket science either.

  • Thank you PMRpro I simply bought vitD from tesco 500iu, I had no clue of amounts x

  • That is a good start. Your GP should give you a prescription for the high dose stuff but you say he's not a lot of help.

    If you are really low it is fine to take at least 2,000IU a day without any concerns at all. More is better (say 5,000IU per day for up to 8-10 weeks) and then get it tested again. If your body stocks are really depleted then the bucket must be filled up before it spills out into the blood to be measured. And you can have a good reading but then it falls again so get it done a few months later too.

  • Thank you PMRpro my doc didn't say how low, she just said its low. I didnt ask questions as I was stunned that only vit d and inflammation was found. I was silenced x

  • It is likely the GP didn't do the really important tests - they are specialised and they simply aren't always aware of them - wouldn't know how to interpret them if they did know!

    But both a low vit D and the inflammation can cover a LOT of things.

  • Thank you PMRpro me and my partner are in the dark. We are searching for answers. As for th blood test costs. You would think was rifling through her pockets an stealing her cash x

  • Have you any idea of blood tests? My CKD-EPI is > 90 and normal is > 60... I am not sure what it means. I was told about vit d and inflammation. I am sure I know whivh one is inflamation on my test. Also my Eosinophil is 0.1 normal is <O.4. Mt RDW is low too. Sorry if this is gibberish. Its gibberish to me too

    I couldnt ask these things as I was on the phone the results was given. Way over my head

  • Your eosinophils (one sort of white blood cell, that increase in asthma, allergic reactions and other things) are in normal range - you don't want them high, i.e. above 0.4.

    healthline.com/health/eosin...

    Your CKD-EPI is what is more often called the eGFR - when you have certain blood tests done they use the results to calculate what is called an electronic glomerular filtration rate - the amount of blood filtered by the kidneys in a given time. It falls if you have kidney problems - you very obviously don't! That is very much in the normal range.

    patient.info/health/estimat...

    RDW is a measure of the different sizes of red blood cells.

    "Usually red blood cells are a standard size of about 6-8 μm in diameter. Certain disorders, however, cause a significant variation in cell size. Higher RDW values indicate greater variation in size. Normal reference range of RDW-CV in human red blood cells is 11.5-14.5%."

    So actually low is better than high - your red blood cells are all of similar size, not some very large and some very small which can happen in some diseases.

    Who gave you these results? A receptionist?

  • Thank you PRO

    Yes the receptionist did give me a copy because I knew I may need them. Which I did, my Neurologist said there is nothing she can do for me because she has no test results attached to my file and they are too expensive to do again. Aparently my doctor had sent them so I don't know what happened. Me and my partner drove all the way back to my doctor to get them. I had asked the neurologist if she can ring for them and have them faxed she said she doesnt have time to waste x

  • I have twice been told about how expensive these tests are..... its not nice

  • And it is nothing to do with her - if they need to be done, they need to be done and it isn't coming out of her salary. Include that in the complaint.

    I bet she doesn't actually know. A friend was told by her doctor she couldn't have a vit D test done as it cost over £200. The lab in the Wolverhampton area that does it for the NHS also does it privately for the general public if they want it done. For £25, the same as they charge the NHS!

    It's perhaps as well she hasn't to deal with me...

  • PMR pro. Yes they would themselves in trouble with you. It's as if I am taking up their time and money. Not nice, I have no ide what state people will be in when we reach very old age x

  • My old GP refused to test my vit D level when I asked him a few years ago. I live in the very far north of Scotland where MS levels are highest in the world. I had two autoimmune diseases and was on methotrexate and Hydroxy at the time. He refused saying I was "too well" and the test was expensive (£30) to run. He said all our levels including his would be low and our bodies would have adapted to a different normal.

    So I got myself privately tested and the doctor from private clinic phoned to tell me that I was at the very bottom of insufficient at 26 and advised me to tell my GP! I did and he reluctantly admitted that my calcium levels were low too. I had just started Prednisolone and had been classed as clinically depressed. He prescribed AdCal D3 and within two weeks my temporary depression had lifted and I have never had the RA symptoms back!

  • Twitchy I think we need to be very pushy just to get things done and be heard. How can he put a£30 price tag on your health its disgusting! Thank god you are out of your depression x

  • Thanks. Well I had just been hospitalised with my first serious drug reaction and was uncharacteristally low at the time. As usual I researched and came up with vitamin D deficiency. This is why I've now learned to always trust my hunches about my symptoms, whateverdoctors say. And actually he was and is a very good and supportive GP in the main. Since moving I've kept in touch with him and am now back under his care for six months until we settle permanently further south. The r again I like him is because he has never made me feel like a hypochondriac. But my inflammation markers have been very high always which helps!

    I've had to formally complainabout one horrific GP and also to PALS about the hospital where I was mistreated as an inpatientwith sepsis and pancreatitis last year. No one messes with me anymore! X

  • You sound like you have been through the wars TwitchyToes, fingers crossed for healthier times x I am glad you have a giod doctor, they are priceless x

  • Yes I've been very lucky on the whole. And I'm not terribly sick now but I just struggle a bit with vertigo and other rubbish - so my neuro might be right to advise me to stay clear of anti-rheumatic drugs for now.

    In general I find that remaining firm and smiling a lot and looking doctors straight in the eye really works.

    They are just human beings, even if they've forgotten this, and may need actively reminding!

  • I don't know what the matter is with these doctors, they're either hoping for a medal for saving the NHS. money or they've become vergy complacent. Shame ,they spent a long time in medical school .All the best Elfie

  • I'm actually not sure it is complacency. They DO get someone on their back (an accountant manager) if they are too profligate but many of them are totally disillusioned with what they are doing and see no way out. They work silly hours - a lot with no pay now, just to write up notes at the end of the day.

    I do have a lot of sympathy for them in general because they have been subjected to lunatic top down NHS reorganisations that have made things steadily worse. And now JH tells them they are greedy and feckless. Which they aren't.

  • The test results you have given us are not expensive ones! This is the full blood count that GPs run all the time!? The specific autoantibody tests should have been run by your rheumatologist at the clinic and you should be able to access these via your GP. These probably are expensive but they are very important if there's a need to confirm or exclude diseases such as lupus, Sjogrens and RA.

    Inflammation is normally assessed using tests called ESR and CRP. Sometimes more sophisticated labs use PV instead of ESR now as it is more expensive but a more accurate measure of inflammation in your blood - and doesn't vary as much according to your age and weight. ESR costs almost nothing to run and is often done in GP surgery because it's so old and simple. Any sign of ESR/PV or CRP on your print out? Or folate or Serum B12?

    Ironically the most expensive test you seem to have had is the vitamin D one and I would encourage you to ask for this to be printed out as well. The labs usually put their normal ranges in a column adjoining the results so you can see where yours is in relation to normal. Let us know if you have any of these on your results print out and Pro and I might be able to advise from our own experience. Alternatively you can always look them up on labtestsonline. Twitchy x

  • Ps oh yes and I agree it's quite wrong that you are told how expensive they are - this should be irrelevant and not something to mention to you. Grrrr!

  • Hi Twitchy I do have ESR on my bloodtest. It is ESR 32 normal range 0-15. X I will check out labtest online.thank you x

  • Oh that's good then Holly. The idea with ESR is that, for women, you take your age, halve it and add 5. This should be roughly your normal range rather than the 0-15 given. Most rheumatologists say that anything of 30and under is okay but really it depends on your own normal. This is why, with inflammatory diseases,the ESR and CRP are used to monitor over time so that they get to know what's normal for you. In theory anyway!

  • Thank you twitchytoes im 45 so only slightly over then x. I feel like the good people on this site should be at the hospitals and gp surgerys, show them how its done x

  • The "equation" is now disregarded by many experts - another, could they decide one way or the other, please! They have decided that it isn't normal that the ESR should continue to rise, the high values they got in the original screenings done to assess the "normal range" were not actually higher in normal healthy over 40s - there were a lot of false highs because many had some form of inflammation developing unseen. So a lot of labs now use 1-20 as their range.

    But as you say - it is "your personal normal" that matters and the trends. And there are still labs that stick to the 35 top end level. Unfortunately, it isn't recognised that some of us have normals in low single figures - so even a reading of 25 is very high. I suppose we all need a panel of basic bloods done every 5 years or so to establish what is OK for us - before we get old and wrinkly!

  • I had a GP like that - once you got to know him he wasn't too bad, he was actually desperately shy. But for goodness sake - if you don't like people and have done medicine, go into pathology or forensics. Even anaesthetists have to speak to patients these days...

  • ops, sorry for butting in but I have a simple question. I am new to UK and have asked for my blood test results x3 to be sent to me when the Rheumy sends copy letters out. I have never got the results. Am I entitled to them? Can I insist on getting a copy from the surgery practice? I paid £200 privately to Bluecress for intensive tests which were superb but I seriously need now to do my own cross referencing's. I have noted down a lot of your knowledgeable points and hope you don't mind me butting in😖!

  • Hi Goldie, your not butting in, we ar here to talk. I went to the receptionist and asked her for copy, she printed them no questions asked. I keep copies now because one hand doesnt know what the other and is doing , different departments i my case like to loose things x

  • Not sure if you are "entitled" to them (you are entitled to some things) but I had almost all my consultant's letters copied to me too. And any decent practice will give you them though they might charge you a bit for time and printing if there is too much.

    You can only ask.

    And no - of course you aren't butting in! It's relevant.

  • Makes you wonder sometimes why some of these people are in the caring profession.

    They're supposed to be there to support you not knock you down.

    Make a complaint to the hospital you shouldn't have to tolerate treatment like that.

    Good luck,

    Crusee

    XXX

  • Thank you Crusee, I will. My partner was born to complain x

  • Glad you have someone to take your side it's not always an easy thing to do for yourself if you feel,at a disadvantage to start.

    Best wishes.

    Crusee

    XX

  • Yes crusee, my partner is very supportive and by my side. I try to keep alot to myself, but he saw what that visit had done.... a lot of damage. It was supposed be relief that the appointment had arrived, my partner was not happy, he kept quiet at the time because he knew I was gonna cry and wanted it over with with no fuss. But yes we will complain, what about old people and kids, what if she treats them that way..... terrible x

  • A lot of damage can be done in just a few moments when it's taken so long and a lot of determination to get that far.

    Easy for me to say but try not to let it drag you down,and remember you gave a good man to support you.

    All the best

    Crusee

    XXX

  • Goodness - hope the complaint goes in. I have had a couple of appointments like that. I can only get one nurse to help me fight to regain hair growth before it is carried and too late. Why are some Drs so uncaring? I am so sick of shrugs and sighs from them. Be strong I hope they put you on a drug to help soon - try Vit D and Vit B12 in spray form - really helped me. First thing my Immunologist put me on. Keep in touch.

  • Thanks Goddess. I hope they open there eyes and ears and realise you are asking for help and that it is nit just a cosmetic thing, it changes who you used to see in the mirror. But what the mirror does not show is your inner strength, I hope they give you the treatment that you need and deserve. I didn't know vitamins came in spray form. They didnt give me anything, they just rang and told me the results and I asked for a copy. I bought floradix and vitamin d tabs, but would prefer the spray. I think some doctors just become immune to other peoples pain..... its a real shame because most people wait until they are at deaths door before they visit their gp x x

  • I am mixing up names now. Typical me! My spelling is also off and I also now mix numbers..... not good when you work with numbers x

  • How awful no wonder you have been so low, I have been in a similar situation this year with the rheumatologist I saw in March, he was very dismissive of my pain and symptoms, he had a very rude manner, he told me one thing and then something different in the gp letter, he missed out important blood tests and lied to me about them, I wrote to him asking for answers and pulled him up on his attitude towards me, I am now waiting for a second opinion but have felt pretty desperate lately with all the waiting! It's all exhausting and we shouldn't be made to feel as though we don't matter or are inferior in some way, they are not gods and they are not above us! I now get copies of all my test results and try and be clued up on things so I can challenge them and I make notes...lots of notes because I can never remember everything. There's no need for them to be rude to us either, if you can muster the energy I would call the pals office at the hospital and tell them of your experience and how it's made you feel, that's what they're there for.

    I'm sorry you've had such a rough time of it, I really do empathise.

    I'm glad you've had a better day today and hope tomorrow is even better for you.

    Diane🌺Xx

  • Hi Diane, I just saw your message, thats terrible, if a mistake is made then they can at least apologise and not patronise by i am glad you pulled him up on it! Hang on in there, I know its difficult and I know sometimes their behaviour can make us feel like burden, but we are not and we all need to fight, we are not asking for the world, just answers so we can try and help ourselves. I hope you have answers soon. Until then, we have your back and huge ears for listening x ♡

  • He didn't even apologise in his letter to me but just went over the same things and just repeated himself, in the end he offered to do all the blood tests again to start over including the ones he had missed and said failing any answers he could give me I could go to St.Thomas' Lupus clinic, when I went for my blood tests he had only requested the two that he had missed out. I was so unimpressed and upset that I asked my GP for a second opinion, in fact I've just received my appointment For it this morning on the 22nd Nov, (9am, not a great time when you have overwhelming fatigue and have to travel 25 miles) it's not at St.Thomas' but with another rheumatologist that has a special interest in Lupus, I'm just hoping and praying he isn't like the other one and will hear what I'm saying or I shall burst into tears, if he understands where I'm coming from and I get a firm diagnosis I will probably burst into tears! You are right we just want answers so we can understand ourselves and help ourselves, it's so important mentally to know why we feel so poorly in order to manage it.

    I shall let you know what the outcome is.

    Hope you can have a pleasant weekend.

    Hugs

    Diane🌸Xxx

  • Hi diane, I think tears wil flow no matter what. I hope they are understanding, you sound emotional which i understandable. I think sometimes when they talk over don't listen, we need to point it out and say"you are not listening me" because if you don't you leave an beat yourself up about it. That time with the doctor is OUR time, they seem to forget that. Maybe just incase you should prepare your responce if he/she does not listen, because i the moment and when upset can throw you off and silence you. Hope all goes well hun x

  • Sorry about missing letters ect x

  • If you click on the right hand box with the little arrow in it a menu comes up with the option to edit - very useful!

    On other people's posts it just offers Report...

  • Thank you PMRpro. I am using my phone which doesnt seem to like this site. I think need to switch to my laptop. Takes forever to type, and then it's all wrong. Thats my excuse anyway

  • I couldn't do it on a phone! I have a small computer - with a full size keyboard. Wouldn't be without it!

  • Thanks Holly I hope it does and yes it can throw you into silence when they say certain things and that's good advice to prepare my response if they aren't 'getting it '.

    Will let you know how it goes.

    Look after yourself 🌺Hugs🌸xxx

  • That is one of reasons I often tell people to take a partner or friend with them, preferably someone who isn't in awe of doctors. They don't have to say anything but could take notes - explain to the doctor you can't remember things and it is to help you. Play the innocent - don't hint it is to make sure they don't rewrite history! Even record the appointment - saying the same thing, that it is so you can go over what they have told you later and understand it properly.

    One lady on a forum said she did that, the doctor realised she was being recorded and changed her attitude completely from the previous time.

    It's not right you should have to do it and you wouldn't with a really good doctor - but some haven't learned enough to be good yet...

  • PMRpro that is great idea to record the conversation, I may do that. X

  • I record all my consultations on my iPhone - always have!

    My hubby is an absolute gem of a man too but he hasn't a clue and things just go in one ear and out of the other at appointments. But then my neuro isn't a mean-minded thug like your neuro -just a wee bit of a head girl bossyboots know it all type!

    As you will see if you look at my recent posts -I was in a total pickle about this last one with neuro as I was going minus hubby.

    So I took a list with me and recorded it so I could play it back to him later. This worked really well for me and I can listen to all my appointments for rheumatology on my lap top whenever I need to now. I would never share them with anyone else and only asked a consultant if I could once for a special reason. I just turn it on record before the appointment and keep the mike pointing up from a pocket in my handbag!

  • Mine was a healthcare professional and I'm told he was fantastic with patients - but hopeless with any of us! He sat and watched as a colleague of his threatened to throw me out of a consultation because I was getting violent! I had the temerity to raise my voice as I asked who on earth it would be besides her to sign off there was no sign of epilepsy so the (incorrectly imposed by her) driving ban could be lifted! After THEY had made a mess of getting my EEG results and asked if I had them - they hadn't a clue, we had to explain the system to them - and she denied it was her duty. "Oh, no, only DVLA can do that". Yes ma'am, in response to a doctor's declaration. From you.

  • Good for you! I would love to have the knowledge to stand my ground better. I bet that gave them a nasty shock resulting in wanting to throw you out so you cannot b heard. Did they lift the ban?

  • I refused to see her again! It took another 3 months to get my driving licence back - and DVLA told me she should have waited a month, telling me not to drive in the meantime. Only if there had been a repeat episode in that time should I have handed back my licence. Which there wasn't so I could have driven again and that would have made a big difference to me.

    Now I take no-one's word - I check with the authorities. But it all happened because she didn't listen to what I told her and totally mis-assessed a previous problem she had't been party to that had been identified and sorted by another doctor. I wasn't well, had a lot of pain, I was housebound, lonely and depressed as a result. All things that make even the most aware and knowledgeable patient fragile. I had a similar instance where a junior doctor didn't do her job of discharging me properly so I went back to get it sorted. She refused to explain something about the medication and told me I was interfering with her coffee break! I just stood there in tears while she turned her back and left. OH realised he'd made a mistake not going with me. But by the next clinic appointment a few weeks later I'd recovered and laid all the mistakes I was aware of out to the senior doctor I saw - who then identified a couple of others. I told her the entire story - and she assured me it would be "dealt with, that wasn't acceptable". Which at least made me feel better :-)

  • GOOD! I am glad you have your licence back, and I am glad you are in a better place. When you are unwell it does make you fell vonurable. Fancy that, cheeky mare saying you disturbed her tea break! Some people have no idea. You came back guns blazing, I love that!!

  • Hi Twitchy I just read your message about recording seems I am going to have to get a recorder. But to be honest the last visit I would not like to hear back. I am a bit of a deer headlights with appointments, my partner is the brains of the outfit. As for my las neurologist, I would be very scared to play her recording backwards.... x

  • What a great idea to record it, but like you say we shouldn't have to go to such lengths.

    My appointment has just come through for my second opinion, 22 Nov, 9am which isn't a great time when you have overwhelming fatigue and to be awake and compos mentis, I'm pretty spaced out and brain dead most of the day let alone at that time, all my appointments I have to arrange for are late afternoon because that is my better time, so this is going to be really hard!

    I guess beggars can't be choosers!! As they say!

    🌸xx

  • GRRRREAT discussion holly & everyone 🌟🌟🌟🌟really moving to read my way through it this morning....you make me feel so glad we're all here. Thank goodness for our wonderful forum 👏👏👏👏❤️

    Holly: just reading this, I know you & your man 👫❤️ have the strength & courage & savvy to break through to more detailed & personalised diagnosis & treatment plans for all your multisystem issues + better quality of life.

    And I know that this thread + every update you give us will be a BIG help to anyone who comes here to read but can't bring themselves to post. Thank you holly 😘

    🍀🍀🍀🍀 coco

  • Thank you barncow, thats lovely thing to say and my partner is my rock. My angel. You and others have no idea how much you have helped me, I was at my lowest point when I found this site. Also like me I think a lot of people are rested up in bed a lot so its nice to message and not feel like you are moaning. I have very good sence of humour and now its back, along with the smile lost...... thank you x

  • Holly, I'm disgusted about how this person treated you, and hope you go ahead with some big time complaining. As to letters being sent between hospitals and GPs, it took three months for a letter to be sent to my GP to say my vitD was seriously low. Two months to be typed, then another month to be actually posted. I complained big time!

  • Lupiniks that is so bad! They moan tests are expensive maybe they hide the results in a heavily armed vault. Glad you complained, these things that seem minor to them, is not minor to us. X

  • I don't know if you're in the UK. Or not but if you are I should complain to Pals. Ask for a form at your G.p.or ring your hospital .make sure you get an answer from pals to see what they've done about it.Nobody needs a person like that in their live. You can see a different neurologist whereever you want ,it's your choice. You'll see you will feel much more empowered. Good luck Elfie

  • Thank you Elfie. I am glad to hear that can see another neurologist if need be. I was worried that it may set me back few weeks or months if I have a EMG/NCS in four weeks and I am waiting for MRI hopefully these things won't involve my nasty Neurologist x

  • Sorry that happened, have the MRI and see her for results. Make an appointment with your GP now and tell him about your experience. Also, Remember that you have to stand up to bullies! Look her in the eye and as calmly as possible tell her that you appreciate her knowledge and need her help and patience. Good luck!

  • So sorry u had a bad experience if I were u I would make a formal complaint to the PALS Dept , that was an unacceptable behaviour from the Doctor. I work for the NHS and that is not the way to treat a patient. Hope it gets better for you.

    Best wishes.

  • Thank you madhead, my partner will put in a complaint, when it happens it throws you off for a while, I was very upset, but now I am angry. IF a complaint stops her doing it again or at least makes her think twice, its a good thing x

  • It's great when misery turns to anger and you can harness it to good effect! By complaining you will be helping others as well as yourself. And I bet there have probably been other complaints of a similar as she sounds like a real bad 'un to me! X

  • Yes I am sure she is a serial offender! I am very much a timid person, but she won't get away with it, what if all of us was to take our issues out on others, its not right. I am one of those people that cry and fall apart, then in time I feel, HOW DARE SHE MAKE ME CRY MY OWN TEARS.

    Im always playing and laughing and I try to be kind to people, I think that is upsetting, that a total stranger for no reason took me to my darkest debts.

    She let the humiliation roll off her tongue. I sit and think, then I respond in an adult way.

  • Yes I know that feeling of humiliation well. And I'm not timid but I believe I'm also kind and like to please. Why should we have to be these Warrior patients? But the reality is that we do and you don't strike me as inately timid. So start unleashing your inner warrior and I wouldn't be surprised if soon you'll want to see her again so you can be as fierce and warrior like as you need to be with such people.

    My neuro told me I looked too well to have much wrong last time. She didn't say that this time but I was all prepared to say "you can't judge a book by its cover of course - I would have thought a professional like you would know that?!". I almost wanted her to say it this time!

    Twitchy

  • Good im glad ,You are within your rights to ask for another consultantconsultant. Make sure you get a good outcome.

    Warm wishes to you Holly

  • If only I could like your posts at least 5 times!

    The NHS is a wonderful institution - with all its problems. But people like her mess it up and get patients' backs up.

  • PMRPRO, yes there are some wonderful NHS staff, working many long hours yet giving it their all, if it was a good experience at this paticular hospital I would name it. It was my first visit and it is unfair to say they are all nasty x

  • I hope not - a large proportion of my family do or have worked in the NHS! Including me...

  • I feel for your predicament with your Dr. - for every smart alec remark she made that was unkind and not necessary it would take all the strength I had to not respond back how I felt about her stinging words!! Then I would have left and never come back. If you do go back to her you need to report her 1st. If she'd have said that to me "do u know what heels are" I'd have said "NO, explain it to me!" Let her answer her own question!! And the pushing & pulling, I'd tell her if I could do it I wouldn't be here! When she said what does it matter? Say to her "IT Matters To ME, evidently not to you!! I wouldn't trust her after all that because if she acts that way with her patients who she should be kind and respectful to then she needs to be reported & not trusted with helping me. Get the book "Boundaries" by Cloud and Townsend" the one with the red pencil on front cover of book. Go to Betterworldbooks.com and put in their search field what you want. They are very cheap and you can learn how to not take the abuse & you will come out of that Dr. office with a new sense of who you are & what she isn't. No need to be down & out over someone else's problems -remember, they aren't your problems that made her act that way. It was her attitude that sucked which had nothing to do with you.

    So cheer up because when your not feeling your best that's just when you need to develop a positive outlook and pray that you can receive the best help for your sickness.

    I write to you in God's Love, Elaine

  • Thank you Elaine, I think the humiliation of it was too much, it was a happy long awaited day for us, so it was a kick in the teeth. I will have my partner make a complaint, to kick people when they are down is very low. I don't think my partner will tolerate her again because he had to deal with the aftermath. I am naturally a timid kind of person but I think if I have to see her again she will not have the joy of upsetting me. I hate to think of the level she took me too. One day she may learn that hurting people can cause anger instead of upset. I will find these books because it looks like I will need a thicker skin and a stronger backbone.

  • I know exactly what you experienced. I had a DVT in jugular vein in Feb which was very scary and numerous tests for cancer as a cause (strong association with this particular location) but lucky as nothing found. Have had hashomotos since my twenties. Then asked to be tested for ANA which was + homogenous and Malar rash and long standing rash and joint issues and referred to rheumatologist. Was very pleased to get answers. Well, he was the nastiest person I have ever met. Even disputed the dvt despite Hospital haematologist confirnation. Refused to do more tests. I was shattered. Returned to GP who referred me to another Rheumatologist but with a very long wait. Finally she was wonderful, ordered more tests and found I had APS and SLE and started on Plaquenil. I wrote the first quack a factual letter on his performance and also an online review. I am still thinking of reporting him to his professional body. Please hang in there - there are some great doctors and ones that should stop their practise. .

  • Well done you for following this through by reporting him. I was told by a highly recommended rheum in January of this year that I did not have a connective tissue disease, based on blood tests taken when I was still on steroids. He said this made no difference. When I asked him what could be causing my small fibre neuropathy and high inflammatory markers he just shrugged and said it wasn't his bag - try neurology or endocrinology or even oncology.

    Six months later in a different hospital, off steroids, my immunology showed up clear positive for autoimmunity and a lip biopsy then confirmed Sjogrens - a connective tissue disease.

    The previous guy wasn't rude or unpleasant exactly. But as a parent of a son on the autistic spectrum I recognised the black and white tendencies. The trouble is that things are rarely black and white in rheumatology!

  • Auto immune issues are never black and white and many doctors can't deal with ambiguity.

  • Hi Holly, I got your reply & am pleased that you took my words as help to you!

    I used to be very timid when I was younger but I developed into a person that won't sit back & take the cruel remarks from bullies. I don't reply back in a mean way but they get the message all the same.

    You are so very right when you say she got pleasure in upsetting you. Maybe after she gets reported she'll realize that she can't take her anger out on patients!! I hope everything goes good for you.

    Elaine

  • She is lucky she does not practice in the USA because if you were my patient and I referred you to her and then you informed me what she said and how she treated you, I would have called her and reamed her ass out! That is disgusting and vile..........she should not be practicing medicine; as a matter of fact I would have filed a written complaint to the state board of Medicine on her demeanor and negligent style of practice. WHEN I WAS PRACTICING, MY PATIENTS NEEDS AND ANSWERS ALWAYS CAME FIRST.

    I apologize for the way you were treated.

    Dr. S. (in the USA)

    Retired Neuro-Ophthalmologist

    P.S. Why did it take 7 months to see her? When another Dr. referred patients to me then they were seen within 3 days maximum......even if I had to work an extra 2-3 hours a day. (even though I retired after 38 years, I often worked 50-60 hour weeks.)

  • Vaderviper this length of wait is just how things are with the NHS these days. It's awful but there are too many patients for too few doctors.

  • As TT says, too many patients and not enough doctors. Emergencies come first - and urgent comes next. Having the money to go privately sometimes doesn't help either, you can see a doctor quite quickly - but whether they can do anything in the private hospitals with little or no critical care facilities is another. Just different systems - everyone is covered, no-one will be turned away for lack of money.

    But don't tell me it is significantly different in the US because on my home forum we have US members who have to wait 6-12 months to see a decent rheumatologist - even when they have symptoms of GCA (giant cell arteritis). They go to the ER - since GCA is regarded as a medical emergency and we advise them they need to be seen - and they see people in the ER who have never heard of it and send them home, treating them as drug seekers. I don't think anyone has lost vision yet. But actually, in the NHS the emergency care is really very very good. As is cancer care in general.

  • I must say when I went to a&e the doctor that saw me had done 12hr shift, he was great with me. I was taken back by how happy was chatting away to me about dreams of holiday. I don't expect that, but I must say it was refreshing x

  • I think it's good to focus on good practice and kindness and see really obnoxious people as a sad minority who must be very unhappy to behave in this way with vulnerable people who are seeking their help.

    Last year during my first hospital stay, a surgeon I was under for a supposed uti sepsis was really macho and cruel about my fear of endoscopy. All the nurses and doctors came to me and told me to stand up for myself - told me he was out of order and implied that they felt he had misdiagnosed me. They were right!

    And the fact that they gave me so much moral support really helped me to stand my ground when I needed to!

    No one likes a bully.

  • I really do appreciate the good and I cannot stand a bully. Seems like your doctors collegues know exactly what he is, some people shouldnt have power because they cannot handle it x

  • Yes and I bet your nasty neuro is as nasty to the staff who work for her and even her colleagues. So you nail her and everyone is relieved!

  • I am private and IF the rheumatologist took my case it would be 6 months to an appointment. This is for good ones. The first one I saw who was awful I got in after a month. I should have tweaked.

  • Hi puska, I must say it makes a big difference when you are treated properly, sorry to hear that you too had a bad experience. And I hope that your first neurologist didn't get too inside your head. It makes me angry because they know the odds are high that you are exhausted and weak. If I do happen to see her again, I hope she can deal with what she dishes out because for my partner, its zero tolerance next time. i can guarantee like all bullys, she plays the victim when challenged x

  • I hope you get a responsible specialist soon. It will be a great relief.

  • Hi vaderviper, my blood tests was so that stalled me for six weeks and then my doctor waited weeks to refer me, then I had to join a queue, i went to see a rheumatologist first, my doctor refered me to rheumatology which took 7 weeks, in the end I rang rheumatology myself and they gave me a cancellation I think. She is pretty vile, yes it a shame she isn't in the USA. It was the final blow about the seven months in pain that hit the hardest. I ended up in the hospital corridor sobbing on my partners shoulder. I am a little worried that she will make sure I am at the back of the queue for MRI. I understand the wait will be long but to see it in black and white will set my mind at ease. She barely looked me in the eye. On the same day I was reffered to EMG/NCS and received my appointment for 19th Nov but no MRI appointment yet. I just hope the EMG people are ok with me x

  • I wish there was something I could do to help you......sorry for your long waits. Different here in the States.....When a Dr. orders an MRI it is usually done in 1-3 days.

    I understand your suffering as that is why I had to retire early from medicine (I would have practiced another 5-6 years)....I also suffer from Lupus and Sjogrens.

    If I can answer any questions, please contact me. As a Neuro-Ophthalmologist, I did a double residency.....in Neurology and Ophthalmology.

    Good Luck.

    Dr. S

  • Viper, you are doing something, you are listening. Was it strange for you going from doctor to patient or perhaps a little easier because you knew more about the disease. The fatigue is the worst! But I am not yet diagnosed and struggle at work, I went from 5 days 9-5 to 4 days and that is still tough. Because look ok collegues just don't get it x

  • holly147, it was very difficult going from being the doctor to becoming the patient. My major complaint at the time was extreme fatigue (I was a marathon runner and could no longer run, I could barely walk a mile without having to lie down). It took almost 3 years for me to be diagnosed........I was baffled myself as I thought i might have an autoimmune disorder and ordered an ANA test for myself.........it was negative. As my fatigue got worse I saw other Dr.'s that could not figure what was going on. After working in the sun one day I noticed I had a rash on my upper chest and neck. Now i was convinced it was an autoimmune disorder. I went to a Rheumatologist and had a complete workup.....the tests showed I had a severe case of Lupus as well as Sjogrens. Most patients with a Lupus rash will have a 'butterfly' rash on the face, I did not, my rash was atypical. I found out, which I did not know that even though my DS-dna was extremely high (34.....anything above 4 indicates Lupus) that about 2-5% of people with autoimmune disorders will show a negative ANA. Even Dr.'s learn something new everyday. What upset me most was I did something I often said to Dr. friends that attempted to treat themselves before coming to me. I had a saying "any Dr. that has himself as a patient has a fool for a Dr.! In my own case, I was the fool. I was immediately put on high doses of prednisone and tapered down..........I eventually had to add mycophenolate to be able to taper my steroid dose to 5mg/day. Many of my symptoms are under control except for my extreme fatigue and dry eyes (I just put myself on Restasis to try to help increase my tear production).

    God luck to you,

    Dr. S.

  • its holly 147 my other account is playing up, hi viper it sounds like you have been through the wars, sorry to hear what you have been through, you are going through so much and yet here you are trying to help others, its a lovely thing to do, i hope you are as well as you can be x

  • Thank you much.........I became a Dr. to help others; even though I can no longer practice, I get much satisfaction even if I am only a little help to others. I'll always be available to anyone that wants to ask me anything I may have knowledge about.

    Dr. S.

    P.S. After my 5th year I practice, I worked 3 days a week in my office, operated on the 4th day and worked in a clinic for those that could not afford to pay on the 5th day. I was blessed for many years and I needed to give back to my community.

  • There are a shortage of specialists here in Australia and wait to see a good one is 6 months.

  • Hi holly147 . I'm shocked by your tale - you're experiencing the NHS at its very worst. I picked up on a B12 comment and thought I should mention that taking the tablets can falsely elevate your blood levels (dramatically so) without delivering the B12 to where it is needed. This will stand in the way of treatment by your GP if it is what is causing your problems. B12 is a massive cause of neuro issues and acceptable NHS levels are generally lower than our bodies need.

    Wishing you the very best of luck and perseverance in the quest for diagnosis. Clare X

  • Thank you clare, I wish my doctor had called me into the office rather than on the phone, I could have asked questions, I will up myB12 intake and hope it helps I have to go back to work Monday, my self cert runs out x thank you for the info x

  • I think Clare is saying that it would be better not to take your B12 for a while as it may be skewing your blood serum but still not reaching the parts it needs to reach? After your body is clear of the suplement (and I don't know how long this takes myself so should ask on the PAHU site) then you should get your bloods retested. The only way to have B12, for those with absorption issues, is by injection. Upping the amount you take orally will not help you if you have absorption issues.

  • Thanks Twitchytoes. Yes, holly147, if I were you, I would stop taking the supplements for (I think I'm right in saying) 4 months before talking about B12 testing, As Twitchy suggests, join the Pernicious Anemia site on HU - there are some hugely knowledgeable people on there. I started getting some neuro issues a few years ago and was sent for 2nd opinion to a big Lupus centre where I was tested for everything including EMG/NCS. They laid a lot of emphasis on my low Vit D and borderline B12 - my level was 170. My GP watched my levels fall without acting (despite having been asked to rectify the deficiency) until it was 108 (120 is the lower level of normal in this part of Somerset) and then prescribed loading doses and 3 monthly shots for life. My neuro issues are much better now - it may or may not be the B12 but its importance is under-rated and people do experience MS - like symptoms as a result. Thankfully, treatment can generally reverse things. I would urge you to ask for printouts of all your blood tests - they might grumble a bit but you are entitled to them. Roll up your sleeves and be prepared to fight for the best treatment you can get xxx

  • I wonder if the GP had a lower limit that had to be passed before he could prescribe the injections? There is a great dispute between secondary and primary care about paying for stuff - with the poor patient playing piggy in the middle.

  • Regarding costs - I have been asked more times than I can count (friends and forum users), if my neuro symptoms might be due to Pernicous Anaemia. I know that they absolutely aren't, but it's been a personal battle to get it ruled out.

    At one stage my exasperated GP explained that if I'd had anything as simple as PA wrong with me they would have offered me B12 injections with great relief! He went on to say that the cost of prescribing and administering B12 injections would have been hugely cheaper for the NHS and the GP practice, than the costs they incurred for ongoing investigations, medications and referrals. Also, anaemia is usually a hallmark of B12 deficiency and, unlike you Holly, I am never anaemic.

  • i guess they are looking the the cheapest solution, its not on

  • i have stopped taking my B12 now, i was taking them for a few months or so before my blood tests and during the weeks after also because i was told that it would help with my fatigue. my new hobby is sleeping... (holly147, other account messing around)

  • jen147 , I think you've made a wise decision. The less you can take before being assessed, the better. I was very disinterested when the hospital started flagging up my low B12 - I couldn't believe that a vitamin deficiency was even worth mentioning but, as I have learnt more, I realise that deficiency can be devastating. Keep us posted xx

  • I must say Claire when they mentioned vitamin D i bought the tablets, took them for a few days and then stopped as i too felt that it had nothing to do with the way i was feeling

  • This is something I've been doing, although I feel sometimes like I'm being devious; I stop taking my supplements before I have bloods due so I don't skew results by having supplements in my system. I'm also constantly anaemic (which one clueless GP dismissed as 'may you just need less iron than other people' !!!!!) and I also showed with low Vit D levels. I doubt I've been tested at all for B12 at all but I will ask for that when I have my further vascular EDS investigations. Sometimes taking supplements is equivalent to showing up to an appointment looking smartly dressed - specialists assume everything is fine, even when it isn't.

    good luck with this and I'm sorry you had such a terrible experience.

  • Heavens above - but more likely the place below! - where in the name of goodness did he learn his medicine? Did the certificate come with green shield stamps??????/

  • this is the same one who thinks I'm a drug seeker and refuses to believe I can't lose weight (I tried to bring in my food diary that I kept for a week, showing there was a stretch when I only ate 800 cals one day...he accused me of lying). The GP practice has an outstanding rating and he's consider a master of his field....so I know I'm not getting anywhere arguing with him. I now see his wife, who doesn't think twice to prescribe me medication - though when I asked for more, he filled it out himself and only gave me half (but he put it in a whole box - passive troll there, Doc, well played), then plastered the bag with 'controlled substance' stickers so everyone would know what a naughty opiate user I am.....

    Dat postcode lottery tho. I just...don't go to the GP anymore if I can help it.

  • Nice. Might be clever - but he's rude and spiteful which doesn't go well with the caring professions.

    My daughter had a run-in with a consultant who accused her of lying about her daughter's compliance with asthma medication - no consideration of the concept that she was on the same paediatric dose of some of them she had started on as a tiny, delicate 8 year old and was now a 14 year old, much larger (due to high dose pred) than her mother who would be given an adult dose. Things looked up when he was ignored and adult doses used.

    They looked up even more when she decided to go vegan - but that is another story (and not an approach I would generally suggest).

  • silvergit thats horrible, i have no idea why he would enjoy doing these kind of things, although i have come across horrible doctors, i think i would pay them a visit if ever i am unwell, this started about five years ago, i went for help, was treated bad and didnt return, now I am in the situation I am in now x

  • haha wow i remember green shield stamps...

  • wow i remember green shield stamps.... nostalgia

  • thankyou Silvergit yes it makes sense if you think about it. i want to know whats really going on and real results x (holly147)

  • Hi Holly,

    I am dismayed at the humiliating ordeal that you had to go through with this person.

    I had a simular experience with a rheumatologist, it really got me down but I have moved on now and I now have a lovely rheumatologist who works with me to get the best results possible for me.

    It's really important to remember that you have the right to appropriate respectful treatment, and you have the the right to be heard. I know it seems obvious, but when you receive such poor treatment, it's easy to forget this and imagine that you are the problem.

    I do hope that you or your partner feel strong enough to make a complaint about this person, you may save someone else from a similar ordeal.

    What ever you decide I hope that you are ok now, just remember, it's not us, it's them!

    Best wishes,

    Helen

  • Hi all

    I've followed this post and it has kept me enthralled as reading a book. What a fabulous informative discussion. We have had, idiotic consultants/GPs, how to complain to PALS, informative blood tests and results, symptoms, empathy and anger. Couldn't put it down.

    Many thanks to all the posters, I think it will have helped a lot of people.

    Babs x

  • Hi all - just to let you know that Holly is having trouble with her HU account so can't respond for some reason. But she will get back to you all again when she can!

  • Twitchytoes, because of your screen name i have to ask. last night i had a load of twitching all over my body which is normal, then I felt a pulling sensation in my third toe along, when i pulled the covers back my third toe was leaning stretched right over to the right, making a big gap in my row of toes, it continued on like this for almost an hour, slowly leaning over to the right making a gap, and then very slowly making its way back into normal position, it was doing this all on its own, i just sat and watched, wasnt painful, it just felt very weird to feel and watch yet have no control. I am wondering what is next!!

  • Yes Snap!!! This is exactly where I got the idea for my HU name from!

    I saw a podiatrist a few years ago when getting my private blood tests done in Edinburgh. He was shocked by the state of my feet with what he felt could only be RA swelling, bad pain and heat. He was from my island and insisted I go to GP and start steroids to reduce the swelling and then see him up in the hospital in a month once swelling came down.

    I did this and he could find no sign of RA erosion so was mistified - but he did find morton's neuromas -which pinged and made my toes twitch madly when he squeezed them.

    He said these are very common especially of people have been wearing heels or pinching shoes. Well I don't!

    I went back a few times because he was so knowledgeable about RA and made me little toe cosies for my Raynauds feet. He never found anymore pain or swelling but told me I must never let anyone tell me I have Fibro or ME. (No one ever has though!) He said my problems had become neurological and were probably very rare because he had never had a patient who couldn't feel pain when a mortons neuroma was squeezed hard or who had twitching and vibrating in the night regardless of no footwear!

    The twitching no longer happens, my feet are just somewhat numb and cold these days. Unlike my elbows and mouth! We couldn't make this up really but at least, in my case, I now know that it's small fibre neuropathy and ganglionopathy as part of Sjogrens. Whew another ramble sorry! . X

  • Ps I'll post a bit from the BSSA magazine DVD you can see if you can relate to it maybe.

  • Babssara, it is incredible how many things alot of people on this site have in common. its lovely to discuss and swap stories, on here it feels like taking. person to person with friends, family ect can sometimes feel like a whole load of moaning. x

  • HI ALL this is Holly147 I am having real trouble with my account which is why I am using this one today, everytime I try to reply to anyone a pink banner comes up saying I do not have permission to perfom this action, I will see if it changes tomorrow, not sure of any of you know how to rectify it, if not tomorrow I will switch to this account, its frustrating because I have a lot of lovely messages but by the time I read them and come back to this account my poor lil brain has forgotten every word x

  • You just need to sign in again with your password. It's happened to me a few times recently - I NEVER sign out so it's the site playing up and it is in the middle of reading posts!

    Just trying to think what I do...

    I think I go back to the email notification and click on that again to go to the post I want to answer to. Then the sign-in box comes up, I complete it and it's fine again.

  • Its finally working again.... thank you x

You may also like...