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Old 01-25-2016, 02:17 PM
RunWriteMomHeal RunWriteMomHeal is offline
Junior Member
 
Join Date: Feb 2014
Posts: 36
10 yr Member
RunWriteMomHeal RunWriteMomHeal is offline
Junior Member
 
Join Date: Feb 2014
Posts: 36
10 yr Member
Red face NEW- Possible SFSN - at a testing dead end?

Hi everyone!

I have been reading here since my weird nerve symptoms started in March of last year. Almost a year later and I still don't have an official diagnosis. I finally had a skin biopsy that just came back normal. I'm shocked since I was pretty resigned to the fact that I had some kind of sensory neuropathy and the neurologist who ordered the biopsy (Norman Latov at Cornell) was pretty sure too.

Last March I had tingling come on pretty acutely - first one hand, then the next, then toes then feet and lower legs, within the span of days. It peaked in intensity and then slowly went away and two months after it started it was 100% gone. I was terrified and went through many tests for MS (I am a 35 year old woman, otherwise very fit and healthy) which all came back negative. MRIs -brain and three spine-blood work, an entire physical with extensive blood work, everything normal. When the nerve tingling and burning (mostly feet) went away I forgot about it, figuring it was some fluke and it was gone. But all my symptoms came back this September and have stuck around since then.

I have since then had more tests with Latov, again all normal. I did get a high b6 reading so I've stopped any supplements with b6. I have tingling and weird sensations from feet up to thighs (mostly in feet) burning in feet and sometimes hands, and it's worse at night. I also get that buzzy feeling others mention. It waxes and wanes but is basically present every day off and on. I can't figure out too many correlations to what makes it worse or better - except after exercise it does seem worse for a while, but if "worse" ie more symptoms actually mean "better" when it comes to nerves is unclear to me! I have no actual numbness. I would say the burning has gotten worse since the symptoms came back this fall. I am still able to run (I train seriously and race-marathons to triathlons) and the symptoms don't affect any of my abilities, it's more that I am scared about the future and what this means. Also, it's annoying to have my feet burn and tingle - I am lucky that it doesn't cause bad pain, more sort of irritating sensations.

My skin biopsy was from Therapath and my thigh was 14.71 (abnormal under 8.3) and my calf was 6.45 (abnormal listed as under 5.4 and low normal as 5.4 to 5.9.) Sweat gland analysis was also done and was normal. I'm glad whatever is going on is subclinical at this point, but isn't that calf number a little low? Why is the calf number so much closer to the low end of normal than the thigh? Anyone have any ideas about these numbers?

I am so confused. It's been a year and I still don't understand what I have or what to do. The only other things that came up in my blood work was some mild anemia, since corrected, and the fact that my a1C was on the high end of normal. It was 5.2% Isn't that a little high for an athlete in their 30s??? I am thin, 113 pounds and 5'4 and have perfect markers for everything else, cholesterol, inflammation, etc. No gestational diabetes with either of my pregnancies. My mother does have type II diagnosed in her 50s but she spent her entire adult life very overweight and sedentary.

If anyone has any ideas I would really appreciate it or avenues I should pursue I am all ears. Right now I am going to look into the blood sugar issue and possibly get a two hour glucose test or repeat the a1c. As for the neuro testing, I guess I am at a dead end. I've been tested for celiac (neg) and Lyme (neg but I do live in an endemic area and run often in trails.) Thanks!!!!!
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