Edin Posted February 1, 2014 Report Share Posted February 1, 2014 I recently went in for a skin biopsy, 'an evaluation of small fiber neuropathy' and some interesting results came in. My doctor told me that these small nerves are pretty damaged, in his words they are swollen, frayed, and splitting. So I now have some hard proof of what is causing my pain. Nothing is set in stone, it's just his speculation, but he thinks my immune system is what damaged it. (I got POTS from a virus and this virus is probably what damaged the nerves, which in turn gave me POTS) He is thinking if he blocks my immune system it will give my nerves time to heal and that I can recover. So this is great news if he is correct. Sadly he is retiring very soon and is going to send me to a new doctor downtown. I'll either be getting a call or calling them on Monday. I'm quite excited, this is the most progress I've had in years. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 1, 2014 Report Share Posted February 1, 2014 I hope this is your answer, Edin! Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted February 1, 2014 Report Share Posted February 1, 2014 This reminds me of something I was looking up today. It's called Autonomic Neuropathy. I was researching it b/c of a problem with my eyes. It has many symptoms that affect many systems of the body, but it was interesting in that all of the symptoms listed under 'eyes'... were exactly my eye symptoms! Every one! That worries me, b/c i have some other symptoms not eye related that remind me of autonomic neuropathy, like gastrointestinal issues. I might swing this by my doctor and ask for a neurologist Quote Link to comment Share on other sites More sharing options...
davecom Posted February 1, 2014 Report Share Posted February 1, 2014 50% of patients with POTS have an underlying autonomic neuropathy:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538485/A skin biopsy and/or QSAR should be standard protocol and hopefully will be in the future. It's a solid way of documenting a case with hard lab results for insurance/disability/treatment/etc. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 2, 2014 Report Share Posted February 2, 2014 A skin biopsy and/or QSAR should be standard protocol and hopefully will be in the future. It's a solid way of documenting a case with hard lab results for insurance/disability/treatment/etc.I agree. Too bad insurance companies don't and several are starting to deny any testing for dysautonomia besides TTTs. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 17, 2014 Report Share Posted February 17, 2014 what davecome said! Quote Link to comment Share on other sites More sharing options...
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