Quote:
Originally Posted by akimbo
cyclelops, what a pickle you are in! Those are complex conditions. What kind of doctor do you have treating you--rheumatologist? I presume what you are saying is that although small-fiber neuropathy may be limited to hands and feet--inability to sweat, BP anomalies, migraines, cold extremities, etc. reflect a more systemic dysfunction? Occasionally at night I'll have a sweat so I know I am capable.
BTW, I tried soaking my feet in epsom salts, and it may have been a coincidence, but, I was up until 0400 with worse pain. It felt good at the time though and I will try it again. I take magnesium supplements regularly.
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I have a research neurologist, whom I have seen for 5 years, a rheumatologist who is also a scleroderma specialist, altho I am not diagnosed with that (no substantial skin symptoms, yet, maybe never, I hope, just the weird tight pulling, face rash thing, and all kinds of -itis's, bursitis, tendonitis, etc., which is being watched). I feel like I am living in a very tight wetsuit....(My rheumie does all kinds of autoimmune stuff), and also a research gastro guy. I think these folks are about as good as one gets. I am being treated with IGg. Every one is doing their best. I can't complain.
Yes, mine is systemic, because, small fibers are present profusely in the autonomic system. My neuro contends that Sjogren's is actually neuro, but inflammatory neuro. I don't burn much anywhere, other than my mouth. I sweat too, but not to heat. My skin apparently does not sense heat. I will sweat to exercise, but the doc feels not enough and that presents a risk for heatstroke, which I have never had. I guess I have the sense to get out of the heat.
Yes, it is a pickle. My stupid body is having itself for lunch.
After a decade of being told it was in my head....if only some one had thought to do a skin biopsy. I was at first diagnosed with fibro, altho I had had Lyme, and it was caught in the first month. They stuck with fibro, and I kept telling them I was too sick for that. My lip biopsy came back + and they told me it was a mistake. LOL. Eventually I had to get out of the HMO.
I was in that hideous HMO for over 10 years, and did not get diagnosed until I got out of it. Within 2 years of getting out, I was diagnosed first with neuropathy and later with the Sjogren's, and additional diagnoses are being considered....my ANA pattern has some additional clues, and they are just watching for specific antibodies. Always a waiting game. ( I think it is in the realm of possibility that this was triggered by Lyme. ) Yes, I was treated for Lyme with non-neurotoxic antibiotics, three times, no less, once for a substantial time. I don't think antibiotics help at this stage. My family also has a history of autoimmune disorders, so who knows?
It took 6 years from a + lip biopsy to a highly + ANA.