U Of Michigan, Small Fiber Neuropathy

[kitshalleen]

hi everyone,

i hope that everyone is having a good non-potsy weekend. I was wondering if anyone had a Michigan doctor or a doctor who did tissue samples for small fiber neuropathy. I had an abnormal qsart and the doctor wanted me to follow up by finding a doc who does tissue samples for small fiber neuropathy. that's sort of hard to find.

thanks,

kit

[arizona girl]

Hi Kitt,

I'd meant to comment on your previous post about ivig. I do get it, however most insurance companies won't cover it for just SFN, yet, however if you have large nerve fiber involvement it is considered polyneuropathy and that is covered. There are also many other medical conditions that qualify for ivig, including aag. Which I thought you said you had. If you go to primaryimmune.org I believe there is a list of disease the fda has approved it for.

I'm not sure what all your actual symptoms are, that would help point you in the right direction. Also I posted in the neuropathy poll post about my neuropathy and Rich got pots. If you want to read that.

A link to a doctor that does skin biopsy is found on the neuropathy associations website at neuropathy.org These doctors practice a subspecialty of neuropathy that treats patients with autoimmune neuromuscular diseases. There are not a lot of them, they have a medical center list that you can look at and see if there is some near where you live or can travel to.

So I hope this helps you, take care girl.

[kitshalleen]

thank so much Arizona girl. I really appreciate your support and links. I don't know what I have. I definitely have dysautonomia. I had an abnormal qsart and they told to have the skin biopsy but also told me that there was no way to treat it if I had small fiber neuropathy, so I didn't go back. I don't have the tingling, burning, etc. the qsart just showed abnormalities. there is a doc at u of Michigan on the site you gave me, so i'll go and get tested, and then see what happens from there.

i'm still confused about AAG. it sounds so similar to dysautonomia. do you have to have the specific autoantibodies to aceytylcholine receptors. I have autoimmune issues and autoantibodies just not those. anyway, thanks so much. also I wonder why more people aren't using ivig since it seems to have helped you so much.

i hope that you are doing okay.

kit

[arizona girl]

May I ask what autoimmune antibodies you already do have? Would you mind telling me exactly what symptoms you do have?

I have three autoimmune diseases, hashi, lichen planus and undifferentiated connective tissue disease. These 3 along with some other auto's, including a blood one are often found with cvid. Dr. Charlotte Cunningham Rundles is the primary researcher on this.

My ivig is helping with the sfn autonomic neuropathy, I didn't realize I had peripheral neuropathy until after I started the treatments and a lot of body pain went away and the buzzing in my legs at night stopped. However, I only qualified for ivig because I also have a primary immune deficiency called cvid. My neuro attempted to get if for sfn and I was turned down, until we found I had cvid. I did qualify for pheresis after being turned down for ivig, for my neuropathy and my insurance covered that. I improved on that, that also confirmed my sfn was a result of autoimmunity. It is very hard though to stay on pheresis. My doc uses ivig a lot with many neuromuscular diseases so he is very comfortable prescribing it and knows what to expect with this treatment. I think it is just a matter of time before sfn is covered by insurance, it is already being used for aag and other neuropathies. Mayo is still uncovering new antibodies. I don't have aag either, but it doesn't mean there isn't one there, they just haven't found them all yet. Dr. Grubb told me that.

So I don't agree that there is no treatment for SFN. If you have autoimmunity it wouldn't hurt to have your Quantitative Immunoglobulins done and a sub igg panel to rule an immune deficiency. Especially, if you feel like you catch a lot of stuff but never really run a good fever when your sick.

AAG is just one form of dysautonomia. Dysautonomia can be just primary/idiopathic with no known cause or an other disease state causing it or considered a symptom, secondary to another cause or disease. I'd say mine is secondary due to my diagnosis which show my autonomic nervous system has been attacked. This is why salt loading didn't work for me.

Oh I'm happy to help, it may not be your problem, but it sure can't hurt to rule it out. Let me know how it goes with that doc. Rich had good luck with his in New York and I feel good about mine here in az. No guarantee of course with the one near you, but I'll keep my fingers crossed it works out.