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Small Fiber Neuropathy


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Hi!

Mine was diagnosed when I got my autonomic nervous system testing done. They diagnosed it using the QSART test. It is a sweat test to see if anything is impaired with you autonomic nervous system. I know if you google it you can find a description, I couldn't do it justice. :)

Small fiber neuropathy is when the small fibers of your nervous system do not work properly. Small fibers have both an autonomic and sensory component. I never found a whole lot online about it. But, you can find the most I think looking up autonomic neuropathy.

Symptoms will vary... pretty much any autonomic body function can be involved (so, can have an increase/decrease in sweating, gastro., temperature regulation etc.)

Can also have some sensory deficits etc. as well, so my fingertips bother me the most. They are kinda numb and raw. Also, I don't have as good of feeling in them as I used to. Also, have a lot of the falling asleep etc. of limbs.

Hope this helps somewhat! I am not good at explaining this stuff.

Also, try and not self-diagnose, if you have any of the symptoms then just mention it to your dr. and see if they think that there is any reason to think that there may be anything wrong. Because, many of these things can happen to people at times with normal nervous systems. :)

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IS there anything you can do to help this condition? Also I never really had autonomic nervous system testing done. I went to a neurologist but he didn't even know what POTS was. Then he sent me to a cardiologist..who didn't know what POTS was. The doctor that originally diagnosed me, never did any tests like this because he doesn't take my insurance so I had to pay out of pocket to see him. And It is too expensive to see him on a regular basis.

SO I guess I want to know. What kind of doctor did these tests for you ..a neurologist?

I would like to find someone to really investigate this more for me, but unfortunately most doctors I go to have never heard of POTS. They have an idea of what it means when you explain what it stands for but they have know idea that it has to do with the nervous system and how you have all of these weird things happening. They think it's just a fainting problem.

I'm not sure what kinds of test I could have done. I mean I have a diagnosis and it' s obvious that I have POTS, But I'm thinking maybe I could get better help if someone would do some more in depth testing. Problem is . I don't know If I can get the GP to keep referring me to Neurologists until I find one that knows exactly what POTS is.

anyways just curious about who was treating you and what tests you've had done.

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Hi!

I am still relatively new at dealing with this condition, so I do not know a lot of the answers. I am supposed to have a Dr. appmt. soon that I have waited months for that will hopefully help me out in the understanding of everything.

I know that you can try to do things to lessen the symptoms of the neuropathy, otherwise not sure on any treatment.

The dr. that prescribed this test was a neurologist. Actually a team of neurologists.

I do think that the key is going somewhere where they know enough about the condition to help you. For me this took yrs. (7+) and many drs. (10+) to get anywhere. So, for most it is not an easy road.

My best advice not really knowing a ton about what is out there, your best bet is to get into a major and reputable health system that preferablly has close ties to a university (because they are teaching, they have more chance of knowing about the "newer"/less known conditions.

My first step was a internist for a GP that was affiliated with major university system in Ohio. Then, going to a neurologist within the system that sent me for testing, and to three other neurologists. Also, I have a cardiologist that is familiar with treating this condition.

Have you been formally diagnosed by a physician? Did you have a tilt table test? That would likely be the first thing to get, along with the normal blood tests etc. Then, I also did get the QSART for the Small Fiber Neuropathy.

Hope this answers some of your questions! I have to go to school, I can respond more later if you have questions.

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I also have Autonomic neuropathy specifically Small fiber neuropathy. My docs told me basically it's just an umbrella term for Autonomic Dysfunction but I guess it can affect more systems than if you had Primary POTS. My sx are the same as most on this board except I have gastroparesis and migraines caused by the AN. Which it seems like alot with the Autonomic Neuropathy dx have, well even those with Primary Pots have GP and Migrianes. I'm rambling here but it's all so confusing I guess I didn't answer you questions. I still question it myself and I've been dx for 3yrs.

Dayna

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friday,

get thee to a doc who specializes in autonomic dysfunction.

There is a good list in this site . ..

I was flapping in the wind until I did. Now, I have a much better understanding and treatment than before. I'm still learning, but it is good that my doc knows more than I about all this!

Dari

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