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Small Fiber Neuropathy - Some Information Please


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For those diagnosed with Small fiber neuropathy, peripheral neuropathy, abnormal QSART, etc and POTS/OI can you please inform me of the following:

1. Do your symptoms (neuropathic and OI) wax and wane/relapse and remit or are they constant?

2. Did you develop your symptoms spontaneously or after a viral infection? Acute onset? After pregnancy?

3. what is your chief OI-related symptom?

thanks!

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Hmm... I've been given most of those diagnoses at one point or another. My symptoms are definitely not always constant, though there is some consistency to the fact that I don't return to what I'd call normal either.

I'd say it was mostly spontaneous, during a period of very high stress though.

Hmm, where do I start? I'd say dizziness/headaches/disorientation are a big one.

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Diagnosed with autonomic neuropathy from failed Qsart and other autonomic reflex screening tests.

Symptoms wax and wane.although there is always an underlying sense of "un-wellness", never getting back to "normal" pre-morbid condition, nor ability to return to prior functional level.

Some symptoms developed over time...eg hypotension, hypoglycemia, migraines, Gi issues, started 20-30+ years ago, but tachy/SOB/ weakness/profound fatigue and other debilitating symptoms started suddenly after surgery/post op-infection.

Chief OI symptom- tachy and narrow pulse pressure probably. NMH with standing too long. Luckily I rarely have dizziness- thank heaven for small favors!!!

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Interesting that you posted this thread...I was just going to ask a similar question. I'm currently being worked up for small fiber neuropathy. I will follow up with the neurologist next week and hear what he thinks of the test results.

One of my biggest concerns is that he'll just say something like, "Yes it's sfn...here's a pill to deal with the pain." I don't want to just add another medication. I want to know if I do have sfn...why? Have any of you who are diagnosed ever find out the cause? Or is this just going to be another possible diagnosis to add to the pile? I am tired of just trying to treat the symptoms of everything. I was diagnosed with EDS-hypermobility last year, but even the geneticist told me that it's a bit of an arbitrary diagnosis since there aren't any specific labs we can do to confirm it. I've just always had a lingering concern in the back of my mind that EDS was never the answer and that there's something else going on that we haven't caught. Sorry rama...not trying to hijack your thread.

To answer your questions...my OI symptoms sort of wax/wane but there's usually an underlying not quite right feeling. Heaven help me if I forget to take my Mestinon right away in the morning because then I get a big reminder that it's still there. :) The neuropathy feelings for me have been increasing steadily for the past 2 months...I get burning pain/numbness and tingling and pins/needles. Another fun thing that has started is I keep thinking that it's raining or there are leaks in the house because I get feelings that there's water dropping on my skin when there's not. My symptoms all started spontaneously with no apparent trigger. My worst OI symptom is a toss-up between so dizzy I feel like I'm going to throw up and tachycardia that takes my breath away just by standing still.

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With my neuropathy, I found that compression hose made things worse. A whole lot worse. The constriction seemed to damage the nerves even more.

I think that my peripherial veins are too constricted any way. I think that dilating them helps me more.

Makes me wonder if some of the meds that people are on that constrict the veins could be damaging the nerves somehow.

Issie

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I am also currently being tested for peripheral neuropathy. My symptoms are the same all the time esp if I don't take beta blockers.

I had a virus during pregnancy and my symptoms started right after. I also had a bad car accident with spinal injuries 13 years prior to the pregnancy & virus.

My sy are tachy & dypsnea.

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