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Hi Barb. My name is Allie(age 40) and I have small fiber sensory polyneuropathy, non-length dependent. That is the official diagnosis from my neurologist. The symptoms(burning, twiching, tingling, stabbing pains, cramping) mainly in legs started in 2004 and were intermittent. During that time I would find myself dropping things and my balance seemed off. In Jan. of 2006 I awoke to find the left side of my face numb. I wasn't really concerned b/c I have had migraines that were preceeded with this type of numbness. I found myself preparing for the migraine but it didn't come and after two weeks I finally found myself visiting the first of five neurologist, most of whom had a wait and see approach. By May of 2006, I had constant numbness in my face,legs, and arms. At one time it did progress to my waist. In November of 2006, I found a wonderful neurologist(5 hours from my home)and at the first appointment he listened to me and decided that I was probably right about my condition. I read so many articles about SFN and I new that was my problem. He performed the skin biopsy and 1 week later I finally found out what monster I was dealing with. It was a long ride and my will to know was the only thing keeping me afloat. The numbness is most noticeable below my knees and elbows but still have numbness of my face. I also have no temperature recognition in my lower legs and lessened in my arms. Currently, The other symptoms are muted with the medicines. I take 100mg of nortriptilyne and 400mg of Lyrica for the pain. I was just recently placed on trileptal for the cramps and it has done wonders. I also take ali-flex and darvacet for breakthrough cramps and pain. I still have episodes where my feet up to mid calf turn red and burn in response to hot temp. and stress of being up on my feet too long(this is also called Mitchell's disease or erythromelalgia, secondary to SFN). Currently I feel that I am living more normal than I have since 2004. The power of knowing and dealing with this condition plus a combo of meds. that work for me. I have to adapt my life but I know my limits and I don't push b/c I know that I will pay for it later.
My neuropathy has been caused from my occupation as a chemist. At this point, doctors feel that I have a very slim chance of getting better. The key now is acceptance and adapting. I never thought I would be able to say I feel good, but I can. I hope that you find a cause now and that you sfn will be reversible. I would like to continue to talk with you as well b/c I hope that I offer some information that you need.





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