Quote:
Originally Posted by cyclelops
People with MS can have dysautonomia. You may get some info by googling this. Autonomic problems come with many of the neuro diseases.
Some university medical centers are setting up autonomic testing centers. Most bigger university hospitals or well known hospitals have these centers. I was fortunate to get to one and get all the direct autonomic tests, tilt table, sweat test (thermoregulatory), Qsarts, R to R breathing, valsalva etc. All my EMGs and Evoked Potentials were normal, most of my autonomic tests were off.
My testing took place in 2004, and I have been in the process of diagnosis for many years, and now my ANA has gotten very high, the first solid sign of autoimmune issues besides the positive biopsies I had, however, my doc diagnosed autoimmune autonomic neuropathy back in 2004 and I was and am treated with IVIG. (There was a lapse of IVIG but back on now).
It will take time to get the diagnosis solidly down. Dysautonomia is more likely the issue than actual autonomic neuropathy. Hang in.
AN can vary greatly. I know one blogger has a rather dramatic, 'it's terminal' in her accounts. That scared me too....I am still here. There are some good sites for autonomic dysfunction, which is the larger term.
If you are feeling ok, not passing out, throwing up, having a very low pulse or BP etc. you may have some dysautonomia rather than autonomic neuropathy in its worst form. This can range from mild to severe and there are ways to manage the problems.
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I think you are a little confused about dysautonomia and autonomic neuropathy. I have had POTS, IST and orthostatic hypotension since 2006. Only recently did I have a positive SFN skin biopsy.
People with autonomic neuropathy all have dysautonomia. But not everyone with dysautonomia has small fiber neuropathy, but I do believe over time we will see that the % is very high of those who have dysautonomia from autonomic neuropathy. Also not every one with small fiber neuropathy develops autonomic neuropathy in a noticeable way. But if someone knows they have SFN and they start to get dysautonomia like symptoms you mention then its from the SFN unless its medication induced.