Quote:
Originally Posted by Liftyourhands7
Thanks for all your replies I sure appreciate all of you. I just got back from UCLA Medical and saw one of there top Neuro Docs, she was very kind and spent so much time with me, I have to tell you she was not impressed with my skin biopsy, she said that test is fairly new and has not proven to be all that accurate, she believes that I may have an autoimmune disease and is testing me accordingly, she also from all my tests and information says that this neuropathy may have been caused by a viral infection, but I do not have CIDP because my EMG'S are all clean. She is going to write a full report on my visit today and I will let you all know what it says, she wants me to change one of my medications,gabapentin, to cymbalta she said it works better than gabapentin, she also suggested acupuncture and rlypoic acid. Any thoughts are appreciated. Thanks, Jan
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This sounds exactly what I have been through. I had the skin biopsy and was told I had small fiber neuropathy. Went to Hopkins they said no even though my results said yes. They think Sjogrens even though all of my test were negative. The Schmir's (eye test) was positive. I wonder though if that could be medication induced. Back to Pennsylvania neurologist (who by the way said his mother tested neg for it for 10 years and just tested positive). He sent me to Rheum who is not sure but said not only do I have SFN but I have fibro (I don't believe that). Now I am back to neuro who wants to do another EMG due to finding a change in my leg strenght. He is also considering a muscle biopsy. (unsure why). Him I trust has not steered me wrong once. He found my SFN in a few short months. I hear others wait many years.
I understand your confusion. I did find the lip biopsy to be painful after the novacaine wore off but it tolerable. AI appear to be a lot like you in my need for an answer to this but I ccam coming to realize that I have been tested for just about anything and the only thing found was SFN. They also say it is idiopathic and autoimmune probably from a virus.
My family doctor just told me two days ago that as far as medicine has come they are still stupid when it comes to Auto immuse diseases.
I will continue to look if I see something that might be related to me I will bring it to my neuro's attention. For now I am trying to focus on feeling better.
I do see an accupressurist and she helps a lot. If you are willling give it a try.
I also have been trying meditation and I believe it lowers my stress from the pain. I t took me a while to get to this point> I have had this for three and 1/2 yars. I hope this helps and makes sense. I am trying to do it quickly. My lunch just ended. Hang in there!
