Hello everyone,

I’m a long term lurker who decided to join as I find myself spending more time here as my symptoms intensify.

My history is remarkably similar to many others. In the fall of 2014, in the middle of the day the bottom of my left foot started tingling/buzzing slightly. I thought it would go away, but much to my surprise the next day the right foot joined the party. A month later my hands followed the same process and 2 months later the pins/needles started around my mouth/lips.

After several trips to the neurologist, (EMG, lumbar and brain MRI, small fiber punch biopsy) I was told the results were all normal. My neurologist assured me there was no disease process present and it was most likely transient.

I believed him and for the next 7 months or so the symptoms were static; and while bothered by the fact they did not go away, got on with my life and tried to ignore them. Then, last October they suddenly and dramatically surged in intensity and location. Over the course of a couple weeks, the numbness spread rapidly and soon covered my whole body from head to toe. I was truly shocked and scared, since the original symptoms never once relented, and I couldn’t imagine this being permanent!

My original neurologist actually didn’t believe my symptoms were real. He started using the “psychogenic” word. He soon referred me to a group at a large university hospital. Surprisingly, when I got copies of my prior punch biopsy test, the ankle readings were “low normal”. He explanation was he didn’t do enough of the tests to put too much importance in them.

My new neurologist took one look at the punch biopsy results and said you have small fiber neuropathy. I had an additional battery of tests with notable results of a borderline pre-diabetic OGTT and 3x normal B6 levels. That appears to be a common thread on this forum.

Unfortunately, my symptoms have not yet taken a breather this year as they did in 2015. The nerve disturbances, mostly numbness with some burning are steadily intensifying. My neurologist also believes I have some autonomic dysfunction as I’ve had unusually low bp at times as well as digestion issues and extremely dry skin. So far I’m taking some gabapentin in the evening to help with sleep, but plan on starting a vitamin regimen shortly after my 6 month follow up blood work next week.

So I find myself, like many of you, searching endlessly for a cause for my “idiopathic” neuropathy that has turned my life upside down.

This website has been invaluable as an asset to help understand this complicated disease. I hope to be able to contribute in sharing my experiences and symptoms in the future. Thank you to all the members that have contributed so much for the benefit of all.

I'm sorry that you have found yourself here, but I am happy you finally have a diagnosis. I also had a doc tell me that I was more or less making up the symptoms. I actually felt vindicated when my current neuro told me my skin punch biopsy was positive. It's a shame that many neuros are not knowledgeable about sfn.

Sorry to hear you have landed here.

There's definitely a need for standardized physician testing for SFN by doctors so that valuable time does not go by without a definitive diagnosis.

Wishing you the best care possible.

Cliffman

Sadly, welcome.

My gosh, I could have written your summary myself. So similar! Maybe when your B6 comes down your symptoms will subside. Wishing you all the best.

Hi Protector
Welcome to the Club. Hope you're able to get some treatment and get that PN under control. Feel free to come here and share (or vent) - we'd love to hear how you progress. Take care.

Thanks to all for the warm welcome. I'm hoping to share and learn, but definately reserve the right to vent on occasion. Although I think I'm passing into the resignation stage. Time will tell.

Summerfun: My B6 did come down after several months from 308 to 118 (ref range 20-125). That was 5 months ago and symptoms have not improved. The search for a cause continues.....and for doctors that will pull instead of having to be pushed.