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Member
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
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Member
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
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Quote:
Originally Posted by DavidHC
I just wanted to post an update. I heard back from the rheumatologist and unfortunately the tests revealed nothing. There was no sign of autoimmunity or inflammation.
At this point I haven't decided how to proceed. What I'm thinking is that I should see my neurologist first and see what he thinks. He is still planning on sending out a sample for DNA sequencing for TTR familial Amyloidosis. But I don't believe much will come of that. As I've said before, if I have amyloidosis, it's almost certainly acquired not inherited.
I could push to see another rheumatologist, actually very easily via my GP if not my neuro. I could push to have a lip biopsy done, even though I have no other evidence of Sjogren's. I could push for this, even though I don't like how invasive it is, because despite not having an objective signs, so as far as testing goes, I do have pretty much all the symptoms. Now, here's a question for anyone who can answer it, and here I'm thinking of En Bloc and Glenn in particular. Is the rheumatologist correct that all the Sjogren's symptoms I'm experiencing, the dry mouth, the itchy eyes (also the feeling that there's something in my eye when there isn't), difficulty swallowing, cracked tongue, dry throat, dry lips that also peel and more can be the cause of autonomic dysfunction?
This was what he suggested when I asked him why I have all these symptoms, if I don't have Sjogren's.
Usually I don't care very much for a diagnosis that only results in a need to take powerful and dangerous pharmaceuticals, but with Sjogren's it can be a dangerous disease, so at minimum I would need observation. I would also like to know if my clearly gut mediated condition has actually led to not just generalized inflammation and toxicity or infection, but actual autoimmunity.
However, even if I do have the lip biopsy and it is positive, what I came to understand in speaking with the famous rheumatologist I saw is that it would not be sufficient for a diagnosis, that it is not the gold standard and that I would need more evidence. I'm not sure if that's the case, but he did emphasize that there's no gold standard for Sjogren's.
Also, En Bloc, if you think I should post this elsewhere too, perhaps on a Sjogren's forum say on this site, please let me know.
Thanks in advance to anyone who knows about all this and can offer some advice.
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Rather than instead - you could post this as well on the Sjogren's World, Livimg with Sjogrens forum. I know there are others who use both but without a diagnosis of SJS I think using both is very helpful.
David I'm struggling with many of the same questions as you ask re Sjogrens or other possible causes of neuropathy. I too have trouble swallowing, GERD, dry eyes and nose, an unpleasant taste, lost of taste and smell and inability to sweat. Are these the drying up of the mucous membranes as part of a connective tissue disease or are they symptoms of autonomic dysfunction? To me seronegative Sjogrens seems more likely because it would explain the autonomic and sensory issues. I also have had RA and have Hashimoto's so a degree of autoimmunity has been confirmed. But without autoabtibodies the chances of finding a rheumatologist who would treat this is small now. I hope you have more luck than I'm having in tracking down a diagnosis you feel is correct.
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If you get lemons, make lemonade
Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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