So, when I first saw my rheum (1st time with any rheum) he said after giving me a check up (no blood work) that I have fibro and he was sure no autoimmune diseases and wanted to see how my Neuro appt went and to see him after.
Saw a Neuro for the first time, he looked at my spotted skin asked a few questions and said he needed bloodwork to confirm but he was SURE I had an autoimmune disese. Then he also dx me with small fiber neuropathy and ordered 2 MRI's for neck and spine.
Following week some tests came back. Positive SSA fro Sjogren's. High ANA level, elevated ESR. Told me I had Sjogren's and wrote me rx for migraines...Cym
Next had an appt with surgeon for my hidradenitits suppurativa (so sick of dr appts by now lol) who wants to hold off surgery 6 months to see how new meds will affect me for my SS and he also states it looks like tests results say I may have RA. I am like seriously???? No one mentioned that. I figure no big deal, I am seeing Rheum for 2nd time tomorrow.
That brings me to today. Saw rhuem and he looked at results, barely said a word to me or addressed my concerns, moved diff parts of my body for "exam" and said ibro again. He says, all 3 test must be false positives. Does not order blood work or nothing. I ask again about my symptoms, especially dry mouth and constant coughing and choking (every day) along with other symptoms and as he is walkingout the door he says to see my GP.
Don't get me wrong, I am thrilled if I don't have SS or RA or SLE!! BUT, I want to know what is wrong with me. The only thiing rhuem said at both meetings is he thought MS. He asked me what Neuro said and I told him SS. He said no, I do not believe tests and you are sure no ms? I said no and that was it. I am not going to him again. I live in a small town but even if I have to drive will look for another rheum I guess.
WHo would you believe? The expert, or the blood tests, neuro, and surgeon? Is it possible to have 3 false positives in one set of blood tests and should rheum have done another set of blood tests? I am curious for any opinions. Thank you so much for reading this
Utterley farcical. See a new doc. Please co tact Vasculitis Uk and get a recommendation for another doc who will deal with you properly. This man is a fpol. I will post number here for you. Are you uk based?
I have the same Bloodresults as you, high esr, Ana and ssa going to rheum for first time today. Even though I'm well prepared to the appointment I'm anxious , seems like a lot of stories like the one you tell.
Yes a lot I'm afraid. I have Behcet's and hear a lot of it. I would wait and see how the appointment goes and if it is not good ask for a new referral. If you are in the uk do what I suggested to our friend here and speak with vasculitis uk. They are very good and very supportive.
Oh no. Before I read your post I thought my story was too random to be anyone else's but it seems I was wrong!
Mine isn't quite like yours but there are lots of similarities - bar the Fibro which I think only hasn't been landed on me because it would make previous medics look deranged and irresponsible in the diagnosed diseases and their treatments to date!
So here's the final upshot with me. I've gone from RA (five years of treatment) to undiagnosed and misbielieved (steroids and 4 DMARDs turned my antibodies negative) in a five year period. When asked what my very high ESR and quite high CRP meant then - the rheumy responded "haven't a clue - possibly an endocrine problem - possibly cancer...?". Whey asked what paired oligloclonal bands in spinal fluid meant (we go through these invasive procedures for the sheer pleasure of..?) he replied "don't know - not my area of expertise I'm afraid". So hang on - if I look this result up to find out what the latest form of torture has yielded I see a list that includes MS, Vasculitis, Sjogren's Syndrome and Lupus. Call me old fashioned but I did think these last three were rheumatic diseases? But he's adamant "you possibly did have RA for a while - although I'm calling it polyarthritis unspecified for now - (having made disparaging comments about previous rhem who diagnosed this!) but you DEFINITELY DON'T have a connective tissue disease"
Six months later ANA rolls back to a new rheum in a new hospital as clear positive with a rare pattern. I suppose to myself that it might be a false positive - knowing my bad luck. But ab oral consultant persuades me to do the rheumies bidding and have a lip biopsy to rule Sjogren's in or out. It comes back with a resounding and unequivocal positive for every one of the tiny salivary glands. Bingo!
Now rolling through a succession of tests to see if in my case it's affecting my CNS as well as my PNS and rule out Lymphoma. Here's a link that your numbskull rheum might benefit from looking at.
Ps I've replied with my own version of your story - culminating in a very definitive diagnosis of primary Sjogren's. It's being moderated because I attached two links about neuro Sjogren's that presents like MS. I have this too and even a reasonably good rheumy should know about it!
Ah ok. I know little/nothing about your healthcare service. Nut I am aasuming you will have an equivalent vasculitis support group there you could chat too. Good luck with it x
Not meaning to dismiss Vasculitis UK but they recommended the rheumy who put me through an equally ridiculous and distressing extra journey to eventual diagnosis. If you are in the UK then ask the British Sjogren's Syndrome Association as they have a list - but bare in mind that they recommended same fella to me as VUK - as having a special interest in Sjogren's!
You will find the rheum for you but it may take time.
Yes they should shouldn't they but often not good Tumtum. I have Behcet's ....not formally neuro BD but with mainly neuro symptoms. Interferon works like a dream for me x
I think Sjogren's is the connective tissue disease that most commonly gets misdiagnosed as MS or vice versa. It's certainly the one I have and the rheumy who finally diagnosed my primary SS a few weeks ago wasn't wasn't one who is recommended by either charity or the RA charity. But he was brilliant for me! I was previously diagnosed with seronegative RA and treated with 4 DMARDs, tested negative for Vasculitis and others. My ANA points to Scleroderma but I don't have this. Primary Sjogren's with neurological involvement is a pretty established presentation of a rare disease I believe.
Best of luck. When my post with links comes through I recommend reading both links because it seems that you may have a very similar presentation of primary Sjogren's to mine. Alternatively you could google Neurological Features of Sjogren's and look out for articles by Julian Birnbaum (sp?) MD at John Hopkins Uni, USA
I always recommend people whi suspect this kind of vasculitis go see Desmond Kidd at the Royal Free if they are in the uk. He is a neurologist with special interest in vasculitis and he is fab. Glad you got a good doc in the end Tumtum. X
Always good to have these kind of recommendations Margaret. I should say that I've been moving about east coast Scotland over the last year and the Ninewells Rheumatology Service has proved brilliant. In fact I'd score it way over all the other hospitals I've attended or been an inpatient in for being helpful, friendly and accessible. And the dental hospital here has also been wonderful too. I was finally diagnosed by a really positive and incontrovertible lip biopsy result - which my rheumy explained was very unusual. It's important to make sure Sjogren's isn't missed for other rare diseases because of the increased risk of non Hodgkin's Lymphoma and also small vessel disease of the brain.
Hello Margaret We have talked before and you have been a great help to me. I don't know if you are remember but I am in the U.S. I come here because I really trust their fourms and it is so hard to get a reply here for some reason.
I am for sure going to get another opinion. As I left his office he said I will see you in 2-3 months. Needless to say I didn't make an appt!!!
Gonna call my GP and talk to her and look around. This just makes no sense to me at all. I can see why his rating is 3 out of 5. I will give him a zero.
Hi Linda, I just wanted to wish you the best at your appt today! From what I understand SJS gets mis or undiagnosed a lot but it seems bloodwork really can point you in the right direction. Sadly, the rhuem I saw has NO direction. I am going for a 2nd opinion and 3rd if I need it.
I hope your rheum you see today is wonderful and treats you with the respect you deserve
hoping for the best, my husband will come to the appointment with me