I am confused..3 false positives?

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. 

Thank you for your support!

Oh I do remember yes. It is a difficult road this isn't it. So frustrating. Keep on because you will find a good specialist who will treat you properly. You've got to be so tough to go through this when feeling so vulnerable xx

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.

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!

I'm in Norway hoping for the best, my husband will come to the appointment with me  

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

Oh that is kind of depressing to hear! O go to the vasculitis clinic at Addenbrooke's. I get great treatment there with one particular doctor

It is so hit and miss treatment for this disease. 😐

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. 

Great Tumtum. I am Scottish but living in London now. Glad you're getting good treatment x

Well funnily enough I'm a Londoner living in Scotland now! Glad you're getting good treatment for your BD too. 

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

Thank you, I'm getting more and more anxious now. I'll post here when I get home  

Thank you  

Don't be daunted - try to be strong and stick by your instincts that you have something autoimmune going on. You need better answers than those contradictory ones you've been to date. Best of luck! X

Hello Tumtum, I am waiting for your reply but it is being moderated. I am eager to hear you opinion

I wish I hadn't attached the links now - it's taking so long for mods to authorise it! My story is a bit of a shocker and I'm still raging with several neuro and rheumy consultants and a couple of GPs in my head  - but thoroughly vindicated now at least. It's taken me five long rollercoaster years to get here with a confirmed diagnosis of primary Sjogrens from a lip biopsy. I wish they would let you read it because it might help empower you to stick to your guns with your doctors. 

TJ, I'm in the States, too. Something to consider when looking for a better rheumo is how you characterize the appointment when you first make it. Twice when I've gone for 2d/3d opinions (pre-surgery in other fields) I've preferred the 2d opinion doc & asked to change to that doc. Both times I was told that 2d opinion docs couldn't take on the 2d opinion patient into their practice. I think that's a prohibition from ethical canons rather than from insurance rules, but who knows? I do know that if appointment is set as a new patient appointment different rules apply.

Check with your insurance company. It's okay to tell them that the 1st rheumo was a quack - just don't file a complaint unless that's the only way to find a new rheumo.

You could also call & ask your neurologist for help on 2 things: 1) names of better rheumos; and, 2) suggestions on how to get around the 2d opinion issue.

I was diagnosed with fibromyalgia and possible sjogren . A little bit disappointed by the fibro thing.

WOW! Thank you for the info! I haven't been here in a few days..just been to exhausted but so glad I checked in I have a Dr appt with my GP tomorow to discuss this and my choking. I really appreciate the advice. I am in southern WI and have great insurance so hopefully not a problem Take care and hope to talk to you soon

hi Linda, just saw this. See you are probably Sjogren's.....why disappointed with fibro? Often they go hand in hand auto immune and fibro. Glad you have some answers. x