← Return to Sjogrens and dysautononia and mast cell activation

Discussion

Sjogrens and dysautononia and mast cell activation

Autoimmune Diseases | Last Active: Feb 14 1:52pm | Replies (18)
Comment receiving replies
@butterfly9

Hi there I have been dx with Sjogrens. I also have POTs small fiber nueropathy and horrible fatigue. They say also lupus. It’s been a lot to go thru even here in US. There’s a connection with Sjogrens with these from what I have researched. For awhile everything was being handled separately which made it very hard on me. Rhuemy has tried lyrica for nueropathy but it can make u drowsy. Ia m now trying nortriplyine low dose for nuero pain. I don’t think a lot of ppl get he pain. It’s a viscous cycle. I had a biospy lower right leg and upper calf that dx the small fiber nueropathy by my nuero. I was having weakness down that side. Have u ever been tested for Sjogrens theu bloodwork. Symptoms dry eyes and dry mouth and even now iam learning nueropathy and Dysautonomia. It’s hard here to find drs knowledgeable about pots. I was passing out everywhere before they pieced it all together.

Jump to this post

Replies to "Hi there I have been dx with Sjogrens. I also have POTs small fiber nueropathy and..."
butterfly9 | @butterfly9 | Feb 12 8:40am

Still after nineteen yrs and a quick trip to Johns Hopkins .. still trying to get Rhuemy on board

VIEW AND REPLY
debbieguk | @debbieguk | Feb 12 8:48am

Hi Thank y so much for replying

I'm not positive for the antibodies bjt neither can 40 per cent of cases

but do have rheumatoid factor and gastric cell antibody positive antibodies that can go with sjogrens

I do have severe dry eyes under opthalmology and on 4 diff drops gell

Dry other parts of me but not mouth yet

The nerve pain is awful

I've not been assessed for it

I'm under rheumatology who wants the lip biopsy now

But on top of those two I have mast cell activation so been v poorly and as y say no one joins the dots
.but me...

I'm on a dmard already but it's damaging my white cells and neutrophils so thet reduced it and woow my nerve pain went up another level so it's def an immune issue no doubt

So I'm going on hydrox soon

Going to an autonomic unit but will be a long wait for my heart bp nerves and sweating issues in London

Life is hard with one of these but 3 is v challenging

The nerve pain and sweating are v diff for me.

Last year I was anaphalctoid to foods

So been tough

Hope yr fairing better

VIEW AND REPLY