Haven't blogged for a while as I've been feeling quite down and despondent about everything. However Tilda has inspired me to write an update
Basically I'm still no further along with getting a diagnosis. I did get to see the 'proper' consultant at the beginning of April. He seemed very positive and 'gung ho' and I thought maybe, just maybe, he will finally get the wheels turning and make a decision as to exactly what type of inflammatory arthritis I have. (Despite the fact I have RA symptoms, my Father had it, his sister had it and a surviving brother has it) because my RA Factor is always negative I'm still waiting.
Just to recap at Christmas I saw a locum who decided I should have ultra sound scans done on hands and feet, however by the time my next appointment came up at the beginning of April the scan had still not been done and my GP had been told that the scan requested is not available here on the Isle of Man. The Rheumy said the scan could be done it's just they don't have anyone trained here to carry it out. (I'm very confused now I've had other ultrasound scans done here so not sure what he means by that) Anyway he said he would arrange that and possibly an MRI with dye injected into the bloodstream. He told me he would get straight onto that and that he would see me again in a couple of weeks.
After 3 weeks I tried ringing Rheumatology for an update, as usual my call was answered by a recorded voice telling me to ring outpatients appointments if I was ringing about an appointment, a different number for Private Patients and then a rather curt message about not being an emergency service and if you're worried to go see your GP or A&E. I left my name and number anyway with a little message. Nothing.
After a couple of days I decided to ring Outpatients Appointments to see if they could tell me when I might next be seeing the Rheumy or when my scan was scheduled for. (Just for good measure I did ring Rheumatology first but got the answer phone again.) The lady I spoke to at Outpatients was lovely, though she was quite puzzled as she could see I had had an appointment on 3rd April but they had not received any 'Outcome Notes' which they then use to allocate a new appointment. So she rang Rheumatology herself and managed to get through but they wouldn't speak to me direct. The message I got back was the Rheumy has my notes and he's away right now, until he returns wth your notes we have no idea what his plans are for you. Please call again on Monday 29th April, when he returns. Ok.....
So I wait a few more days and duly ring back on the 29th, now I knew there was a Rheumatology conference in the UK the week before so was I was thinking maybe the Rheumy had been there and taken my notes along as a case study. No I don't know why but I'm just clutching at any old straw these days. Again I get the impersonal answerphone so I leave yet another message explaining who I was and how I was advised to call back on that date. Still nothing.
So I took to ringing everyday, Rheumatology first, answerphone, call Outpatients. After a few days I got to the speak to the helpful lady from Outpatients again. She remembered my name and said 'Have they still not got back to you?'. No says I. She checked on the system again, still no 'Outcome Notes' received and still no Rheumatology appointments or scan appointments. She tried Rheumatology herself. She got the answerphone herself this time. She decided to try a different tack and told me that whilst Radiology (who do the scans) haven't an appointment scheduled for me they might have some pending notes so she would try them next. She put me on hold and after about ten minutes I was debating whether I'd been forgotten and should put the phone down when she came back on the line apologising for keeping me waiting. 'Scans were requested in December' she said. I told her I knew that but they never happened and I had been told they couldn't be done here. She then told me that some notes had been added to the scan request stating that a meeting would be held this week (no date) between Rheumatology and Radiology regarding my scan. It's a specialist scan with a name that unfortunately she couldn't remember (helpful) but that someone in Radiology promised to ring me after the meeting to advise me of the outcome..I am not holding my breath...
Meanwhile after being on sick leave for over 6 months now my employer has ceased paying me sick pay and the insurers they use to pay 60% of wages from 6 months onward have not approved my claim yet as my GP has not provided them with an updated medical assessment. I rang my GP surgery to be told the request was with the doctor but she was very busy and only in part time. So at the end of this month I may not even get 60% of my wages. I might just get a big fat zero. I rang my mortgage company to explain the situation and ask for help.
'But you're not in arrears' they told me.
'I know, I wish to avoid getting into arrears' I said.
'We cannot arrange a payment plan until you go into arrears'
W-h-a-t??
'Well can I take a payment holiday or switch to interest only for a time?'
'No sorry you have the wrong type of mortgage for that, if you wish to switch we will require 6 months payments as penalty for breaking the Fixed Rate Mortgage then there will be set up fees for the new mortgage'.
Forget it.
I am so depressed, demoralised, and demotivated it's not true, everywhere I turn I hit a brick wall.
Apologies for the l-o-n-g, l-o-n-g whinge. Hope I haven't spoiled anyone's day.
JoJo its like a dark joke that no one is able to laugh at - poor you. Keep on pestering everyday and tell as many of the actual people you speak to about your work too so that they know how urgent diagnosis and treatment are. Could you move to the UK temporarily if no work and no decent rheumatology service perhaps? Or do you have family there perhaps? I'm tempted to advise you to go and picket rheumatology with a big placard saying "shame on you!" painted in big red letters with an image of the gruesome hand in Wikipedia? Honestly being out there are exposing incompetence is sometimes the only way to bring about change. Stay on here again now and keep us up to date. Tilda xx
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Thanks Tilda. I replied to this a moment ago but it has disappeared on my screen so apologies if it appears twice! Basically I was just saying how worn out I am with the constant badgering, trying to get someone, anyone, to take some notice and actually do something. My immediate family are all here so I don't really think a move back to the UK would be an option as they are my support network here. I just don't kno0w where to turn next. x
Goodness what a trail you are having. I agree with Tilda camp out at rheumy/ hospital until you get diagnosis. Have you got any insurance policy ? I really hope you get sorted out soon
Unfortunately I only have Life Insurance on the mortgage which only pays out if I die. I have no critical illness cover but I believe RA isn't covered anyway on these policies? I don't know. I just know I haven't any back up plan and it's scaring me xx
I can really relate to you. its very scary. I am part self employed and a 15hour contract with Halfords. At present i have so much inflammation on hands fingers and wrist not sure how much longer i can carrie on for. Just seen the rheumy today to be told my meds are not working. I have a dodgy liver from hep b.He has put me mxt!!!!
Lets hope it works for RA and liver will put up with it xx
No comfort to you, but its mildly reassuring to me that someone else is going through similar to what I am. Must be something to do with islands (I'm on one of those little dots in the sea at the top of Scotland.) I do wonder if these people have any idea what their patients go through. Even if they said "I cant do anything for 6 months" it would be better than just not knowing whether you are even still on their radar.
Is there any procedure for making a complaint? I would have thought that it was quite inappropriate for a rheumatologist to take your notes away from the hospital or clinic for any reason, and leave it so no-one else can access them.
I guess in the meantime the only thing you can do is become like a stuck record with daily phone calls, until you do get an answer.
I know what you mean about being a little reassured when you find someone else is having similar problems to yourself. I'm sure there must be a way of making a complaint but I haven't found out how yet.
Have to empathise with the mortgage situation too - I am really scared about what might happen if I have to reduce my hours any further as I wouldn't be able to pay the mortgage, but its so hard trying to find out what my options would be until I get to the point where I have no money. I am lucky enough to have six months worth of mortgage payments in the bank as a bit of a cushion, but I suspect 6 months would go very fast.
What a bl@@dy nightmare for you, can completely understand why you're feeling so down about things, i really have to admire your patience! Love Tilda's suggestion about you standing outside Hospital with a banner!!I:). Do you have access to PALS or something similar that you could complain to? Good luck for getting it all sorted? X
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I wish I had the energy to stand outside the hospital and complain, I can hardly stand long enough at the kitchen sink to do the washing up these days! If it was my kids, or my Mum being treated like this I would be kicking doors down but I just don't have the energy for myself, if that makes sense? We don't have PALS here but there will be a way of complaining I just need to sort something out x
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It does make sense....it's so easy to put ourselves last isn't it and just put up with things, hope you're getting some support though.. If I lived nearer I would happily support you with a bit of banner waving!!...well with RA permitting good luck JoJo, please keep us updated. X
This is awful, JoJo. Try complaining to the Chief Executive at the hospital, mentioning that you are now financially in a hole because of their lack of communication/follow up.
Thanks Dotty I might have to do that. I wish I knew them personally. This island seems to work on who you know not what you know! In fact I saw a podiatrist yesterday and he told me he was over here on an 8 week contract from the UK. Said he couldn't wait to get back, he was shocked at the hospital over here as it reminded him of the UK NHS twenty years ago! xx
JoJo you must take action even if you have to enlist your family and do it lying or sitting down on squishy cushions on the steps. If they are the network that you stay for then they need to rally round you now in your hour of need.
Think to yourself that if they can do this to you they can do it to others and those others may well be contactable through an RA group on the isle or a branch of Arthritis Care perhaps? It's getting you seriously depressed I can see but you need to harness your depression and replace it with anger somehow? Your situation is shocking.
Earthwitch - have you approached the Orkney branch of Arthritis Care or written to the NHS Medical Director yet I wonder?
If it weren't for my kids, husband's job and my GPs and 24 years of roots I would have left by now. Orkney can only be what it is and at least it's part of the UK and NHS unlike the Isle of Man. You can try and make things better for yourself and for others but if you live on a remote island there will always be limitations and compensations - hopefully in equal measure - but if it gets too unequal re limitations then I'm off to somewhere better - it's a case of fight or flight I'm afraid. The fighting takes so much energy I know - but maybe new things will emerge that are more positive once you've won your battles? Tilda xx
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Yes if it wasn't for my boys, my Mum, my brother and his family I would go. But I've no idea where! Someone kindly rang me just now with the number for the Rheumatology nurse over here. I didn't even know we had one I've never been told about her!
Well that's a great start JoJo. I understand about family and I'm sure there are other great qualities to living on the Isle of Man. But your situation re your job and your health needs addressing and exposing I feel. It's so horribly unfair. I know life is - my life feels really crap too just now - I could seriously howl I feel so sick and horrible still tonight. But my husband just went off to work saying "we have to face reality - you have RA and have to choose between letting the disease win or letting the drugs ruin things for you." It was the first time he's ever said "we" and he is thinking about us moving somewhere where my health needs can be met. I was really touched because until now it's always been "you and your drugs and your RA" which makes me feel very alone up here somehow. If I was going to see a rheumy nurse ever few months to be checked and see other people with this disease I think it would be less lonely. Tilda x
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Yes it would be great to speak to people face to face who are going through the same things as me. I don't have a husband or a boyfriend I live with my youngest 18 year old son and he's great and I love him to bits but God I really wish for a big manly shoulder to cry on sometimes! I think the logistics of moving back across would be a nightmare and I'd miss my friends and family so much. But I think if I don't get help soon I might have to rethink it. Maybe we'll get to meet up one day Tilda and laugh about all of this. I don't feel much like laughing now though!
Ring the rheumatology nurse, definitely, and explain the situation. The best of them are very empathetic. And if all else fails, cry. A lot. And if that fails, go to the hospital and cry. Then complain to the Chief Executive. A lot.
Oh my heart goes out to you. Before I was diagnosed I began to think I was imagining being ill. I went from working full time and looking after my elderly mother to not being able to get out of a chair or bed. Thanks to my gp (now retired) he helped me to get a diagnosis by doing more blood tests and sending them to the Rheumy Consultant again and again. I really empathise with you and hope you soon get some help and support. Take care and dont let the B******* get you down.
I know someone who went to hospital (not A&E) and demanded to be seen - it wasn't for RA, but it worked & in fact he was admitted the same day. Your Rheumy dept. have seriously failed you so far & the fact that the delay is now jeopardising your employment underlines the seriousness of the situation.
You must be absolutely exhausted with all this but you do have an excellent grasp of what has happened, or rather not happened and you can use that to your advantage. I'd say go to the hospital and demand to be seen by the most high-ranking person possible and outline the situation to him or her. You have not done anything wrong whatsoever .... the hospital, however, has been absolutely appalling. What have you got to lose? Have you got a determined friend who could accompany you? I'm with Dotty on this .... but just a bit concerned that Rheumy nurse might make the right noises & you'd feel better but still might not get any action.
Will you keep us all in the loop? So hoping things start moving very soon.
Hi Jo Jo, have you thought of writing it all down in a letter. I've done this twice not in a complaining way but just stating facts, I copy it into my gp. The response was immediate, I got such a shock when the consultant phoned me on my mobile. So maybe worth a try,harder to ignore letters. Good luck x
realy sorry to here of your plight looks like that hospital over their dont have the resourses and i always thought when i used to come over they could fix anything to do with bones
see ive been going to the tt races since 1966 missed out last year and this year with this thing.
dosnt look to me that you are getting the care you should have
all i can say is if you are seronegative cos ive had this little bugger 3rd time now and then its just buggered off on its own and left me with a few problem that your position i say MAY be the same and in 12 months time could be a completly different story
their are so many types of artheritus inflamation you might not have full blown ra
hope things work out
OH HOW I DREAM OF GOING TO THE END OF PEEL HARBOUR ON THE BIKE AND GETTING MY CUP OF TEA AND A BURGER I LOVE THAT PLACE TT AND GP WEEK
Funnily enough I've been joking for a while now that come TT fortnight I shall find my old crash helmet, tuck it under my arm and pretend to be a visiting biker.Hobble into A&E and I shall get first class care with a smile. Guaranteed!
I live in Peel so I know exactly where you mean for your cup of tea and a burger at the harbour wall. If I get down there soon I'll have one in your honour
I do feel for you and what you are going through at the moment. Money and work worries are bad enough without not knowing your full diagnosis yet. Regarding the scan has anyone said whether this will be completed by a member of the Rhuemy team, why I ask is that any scans for my PsA have been done by my actual consultant as he will give you the correct treatment at the same time if required, i.e. injection directly into the joint that needs it. He has a clinic especially for this about one per month and obviously fully booked at all times. I just wondered if this is what is happening to you, the next time you speak to someone regarding your situation may be you could mention it and see what the outcome is.
In the meantime try and not to stress yourself too much, (easier said than done I know), and I hope you get a resolution soon, take care. xxx
So sorry to read of your experience. It is all so stressful and desperately upsetting.
It has been so helpful to read everyone's replies.
I am also at my wit's end and have seriously thought about writing a letter of complaint in my own blood to get the hospital to do what they are supposed to do!!!!! Tears wouldn't show up.
I have had a diagnosis and have been waiting for ELEVEN long long weeks for the letter which confirms and explains this to my gp, other consultants and the dwp. I have been phoning once or twice a week for 8 weeks. I have even had the consultant ring me to apologise and promise to do the letter (that was 4 weeks ago).
Last week I said I would write a formal letter of complaint to the Chief Executive if a letter did not appear... nothing.
This week a helpful secretary said there is no such letter on my case notes.
I am concerned that if I this down a formal written route, I will alienate the consultant - who has been helpful and kind when I have seen him.
Phone the PALS service at your hospital and ask them to intervene... 11 weeks is ridiculous and against all guidelines when early intervention is important with RA. Good luck. Polly
Eleven weeks? That is shocking, why oh why are we treated so badly? I understand your concerns about alienating the consultant as that is exactly how I feel too. I did say in one of my phone calls (I forget now to which department because I have rung so many over the past couple of Weeks) that I realise he is a busy man and has many, many patients but I only have one rheumatologist! Went down like a lead balloon but I had to say it xx
JoJo I do feel for you, it must be driving you crazy with worry and frustration. I can only echo what others have said in that you really do need to get help to challenge all this - family, friends anyone who can help you find the energy to write letters to the hospital chief exec, your local MP, citizen's advice or basically anyone who might be able to prise a diagnosis out of your useless hospital. Or could your family help with the cost of private consultation? I just hope that you manage to get somewhere soon. Pollyx
Thanks Polly, the family are indeed pulling out all the stops for me, unfortunately paying for private diagnosis is beyond our means but there is a lot of ringing up and banging on doors going on today. My latest misadventure at A&E last night has rallied the troops as it were. I don't want special treatment I just want to be treated by a specialist. xx
Sorry Jo Jo to hear you have been meddled about. I feel for beau secause I have had much of the same ... Being left dangling on a bit of string or as I was told my situation as left "pending" and I kept having to chase things up. Interdepartmental breakdowns of communication. Lost details and a major test not done. I had to do loads of chivvying along and chasing up to start a new med. It made me a nervous wreck. I was breaking down and crying all the time. Sorry for Ellen too. Sounds familiar I have to say. My GP was about to do a letter for me to the the chief exec of the hospital when things started moving finally. My consultants are brilliant but didn't have any idea all this was going on below them in the admin and procedural side of things. Now they do. I hope you both have successful answers and outcomes as it makes you feel anxious and nervous just waiting around for people getting in touch and when they don't .... Not nice.
It's dreadful isn't it when we already feel so poorly and all this stress reduces us to nervous wrecks. I'm like a wrung out rag today. I have nothing left to give, just running on fumes now. A year ago I travelled by myself 300 miles from Isle of Man to the Isle of Wight for a cousin's wedding, involved two ferries, various trains and a hire car. Now I cannot even get to the corner shop by myself. Hate this rotten disease
Good luck to you with your hospital. I have felt like a teenager at Valentine's waiting for the post to drop through the door.... ridiculous!! The scary thing is, if I had not got in touch to say the letter had not arrived, they would never have known that it had never been sent (therefore no record at GPs either). No safeguards in place to monitor their systems.
Ellen xx
Hello everyone and thank you for your kind words, advice and encouragement it is very comforting to know so many understand my frustration.
Unfortunately I think the stress finally got to me last night. At 11.30pm I suddenly had a loud ringing in my left ear, followed ten minutes later by a numbness spreading from my ear, across half my face, head and neck. Got carted off to A&E in an ambulance with a suspected stroke. Long story short, thankfully it wasn't a stroke but it seems to be my (as yet undiagnosed) RA flaring in my neck, causing the numbness and the tingling arms and numb fingertips that I have had for several weeks now.
My mother, bless her, has been traipsing to the hospital and my doctors surgery today trying to get some action. Lots and lots of phone calls, different departments contradicting one another, as it stands now I have a Rheumatology appointment for the 18th June and that is the earliest they can see me. Been told unless my GP or A&E have me admitted to hospital as an inpatient I will not be seen sooner. I have cried buckets today. I want to lock all the doctors And consultants into a room together and not let them out until they have sorted something out between them instead of me having to ring each in turn saying "well this department said this , that department told me that". Exhausted. Totally
Bless you... this is horrible. Wishing you better and that they get their acts together!!!!!!!!!! xx
Hi JoJo, just to let you know that I'm thinking of you. What an end to a stressful day for you yesterday and thank goodness you hadn't had a stroke must have been really worrying for you on top of everything else. Hope you get a good nights sleep xx
So so sorry Jo Jo :-(. How terrifying it must all have been. My GP was wanting to admit me to hospital so I would have been right under noses and couldn't be ignored. Thankfully got sorted just before that stage. I know how hard it is to be chasing people up all the time when you feel crap but you can't go on much longer like this. What is your GPs stance in all this? Doesn't an urgent letter from him/her to the rheumy stand for anything? As I said, it made me a nervous wreck for months waiting for calls and hanging about. The last thing you want is stress.
Thank you, Ellen. We have to be so on the ball watching everything and chasing it along. We need to always chase up because as you say, there is not always a safeguard. I got left in pending several times with one department (three doors down from rheumatology!!) not even able to get a test result to them, via post or email! Neither bothered to communicate until I began chasing. It really adds to the stress of it all. Good luck to you. Hope that elusive letter arrives soon and has a big apology in it. xx
hi jojo , i'm annoyd for you just reading your blogg . You certainly are not getting the care you should have i would complain and extremely strongly about your treatment its just not good enough . poor you hun, It makes me so angry when i read things like this . Its our bodies they are messing with and we would like to be party to what they are planning or deciding to do on our behalf. Hope you get some answers soon jojo but i would definately complain it may help and give that dept a kick up the backside which i think they need. Softest hugs hun . Lena xxx :))
Just a quick update. I am seeing my GP on Monday afternoon, she's already sent a letter of complaint to Rheumatology a few months ago so I reckon she'll be in my corner so to speak. I'll post a new update when I have some news. Shoulders and neck flaring massively but numbness on face thankfully beginning to subside!
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good luck JoJo, please keep us updated. X
Filgotinib and Methotrexate with antivirals updat
sulfasalazine/hydroxyc./supplemeents update also blood pressure
Newly diagnosed with RA.... Bewildered and scared!
WHEN WILL I LEARN 
Issues with tocilizumab?
