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Old 05-29-2012, 09:50 AM
Clay22 Clay22 is offline
Junior Member
 
Join Date: May 2012
Posts: 6
10 yr Member
Clay22 Clay22 is offline
Junior Member
 
Join Date: May 2012
Posts: 6
10 yr Member
Default Small Fibe Neuropathy need answers

I've been to this board several times but never registered. There are some amazing stories here, I'm thankful that such a place exists.

As for me, I'm a guy, 36 years old. My symptoms began two years ago as burning on the tops of my feet and ankles, tingling sensations in my arms and legs and dry eyes. I also had burning on one side of my face. Over the next 6 months the burning spread up the front of my legs to my knees and I developed numb spots on my hands.

A neurologoits did aa lot of lab work and an emg which was all normal, recommended klonipin and sent me on my way.

The symptoms continued to spread. Over the next year I developed additional burning and stinging up the inside of my thighs and parts of my hands and forearms. The symptoms on my face came and went.

About 20 months into my symptoms I saw a second neurologist who performed another EMG, antibody testing, more labwork and skin biopsy which were all normal.

As my symptoms continued to worsen I was referred to a specialty center where they drew 14 vials of blood enrolled me in their DNA locus study, found I had dysautonomia on heart rate testing and recommended another EMG which was negative. Ultimately they decided I had a small fiber neuropathy or channelopathy, even though my skin biopsy was normal.

Upon seeing the results from the specialty center the neurologist where I live has diagnosed me with a pain syndrome.

My symptoms continue to progress. The pain that was just on the front of my legs has become circumferential up to my waste. In addition to superficial burning and numbness I now have deep muscle pain, cramps and fasciculations in all extremities that are so bad and widespread at times I become nauseated and literally cry from the pain. The pain in my upper extremties has also spread and gotten worse. My hands are red and swollen in a glove-like distribution. I have developed hypersnesitivity and pain to light touch just about everywhere on my body except my back and head. Clothing, water, a breeze all hurt.

I am on several of the common medications listed on this site. I use compounded lidocaine with some temporary relief at particularly bad sites and a TENS unit that partially distracts me from the allodynia when it is bad. I eat more B vitamins than Montel Williams plus carnitine, inositol, co-q10, biotin, allithiamine, alphalipoic acid, and several others.

I seem to get worse every week. Advice needed.
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