survey - small fiber neuropathy
 

Here, so little is known about SFN and I would like to learn more through your stories. What I would like to learn is: age, gender, how long do you have your SFN, how it started, reasons (like diabetic and so), do you take and medications, how long it took to get the DX and what tests did you do. and if you can discribe your symptoms.

My story is - 54, female, idiopatic (or toxic) SFN since 9.2005. don't take any medication. DX 3 years after onset. sufer mainly from burning feet and sort of numbness all over my body. It started with tinglings in my toes, both legs and spreaded over my body within few days.

eager to hear your stories...
(English is not my lenguage so I wrote shortly, but you can add more).

If we are here - we are in the same boat of pain and suffer. Pray for better days for all of us.

Thanks for your stories.

Amit

This link has some stories:

http://neurotalk.psychcentral.com/sh...hlight=history

Started in 2000, or there abouts, with carpal tunnel. In 2005, had an EMG at my PCP and was told yes, there is noticable neuropathy, then was officially diagnosed 2 yrs ago with SFN....reason, most likely B12 deficiency caused by a lifetime of gluten intolerance...female, 54..I do not take any medications, but do take 5000mcg daily of B12...I have gluten ataxia, tingling, vibrations, and burning now and again...feet have been burning for the last few days...entire body is involved.

Mine started in 2004, but not diagnosed until 2005, as idiopathic SFN. I have taken different meds over time, currently take 1800 mg gabapenten, 25 mg amytriptyline, and .25 Mirapex (for RLS).

I am 54, and was diagnosed as pre-diabetic after the SFN diagnosis, but have kept A1c levels and glucose controled with diet. My doctor did not believe that to be a contributing factor to the SFN.

I have had EMG/NCS, MRI of Lumbar, Thoracic, Cervical Spine & Brain, and Autonomic Testing. After Autonomic Testing was also diagnosed with Autonomic Neuropathy, and moderate autonomic dysfunction.

I have recently been found to have both vitamins B6 and D deficiency. I am hopeful to have improvement with new supplements.

I deal with constant burning in feet and hands. My hands are very week. I also have meralgia paresthetica, difficulty with balance and use a cane to get around.