Quote:
Originally Posted by SylvieM
Hi Mat,
Just to clarify terms. Dysautonomia is an umbrella term used to describe a deregulation of the autonomic nervous system. There are many condtions and diseases that can be placed under it... autonomic neuropathy, POTS, neurocardiogenic syncope, and more serious illnesses like Multiple Systems Atrophy. If you Google "dysautonomia" you can find several websites that explain this in detail. Wikipedia is also a good start.
You can tell from this site relatively few posters who are suffering from "sensory" small fiber neupathy...like most of the painful spreading symptoms you describe in your post.... also have autonomic neuropathy.....yet the potential is there...for small nerve fibers are involved in both. I also read on a dysautonomia website that only about 3 percent of people with POTS have sensory neuropathy.
I have both...I began with dysautonomic symptoms and so far I find them far more disabling....but like you, I worry about the sensory spread. I'm sure others will weigh in here....for I'm a bit confused about how it appears most people with sensory SFN don't go on to develop dysautonomia.
I hope you move opens a door for much better treatment for you!.
Sylvie
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Sylvie thank-you very much for explaining. It has taken me five long years to learn a certain amount about RA and connective tissue diseases. Now most of my symptoms appear to be neurological so I'm having to slowly acquire more knowledge about the workings of the brain and the nervous system. I know a little already about SFN and the diseases that can trigger it. But I didn't realise that dysautonomia is less commonly a problem for those with SFN - I assumed the two were interrelated. I'm increasingly convinced that I have the more neurological MS-like type of Sjogrens but getting diagnosis/ help/treatment for this will not be easy I suspect. Certainly my present and previous rheumatologists haven't seemed to get beyond my negative/equivocal autoantibodies and history of non erosive RA.
I do have paired oligloclonal bands which seem significant to me but not to the previous neurologist or present rheumatologist so I'm hoping that the new hospital will serve me better re rare autoimmune diseases. Sorry you too are falling into the 3% with both types of neuropathy. Have you tried oral steroids at all and if so did they help with the autonomic symptoms at all? The did help me a great deal but all my specialist focuses on is whether my joints are inflammed or not.
Take care and thanks again for your help, Mat