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Regular Member

Date Joined Apr 2007
Total Posts : 164
   Posted Yesterday 3:33 PM (GMT -6)   
Hi everyone,
I have been lurking here, but posted mostly on the MS site, when they thought that was what I have.  Since there are no changes on the MRI, we are back to testing for autoimmune diseases, especially trying to rule in or out Lupus.  This was my initial dx almost 20 years ago by process of elimination.
My ANA has been borderline high but never positive, and my SED rate stays negative, my inflammation rate is 46 when the normal is 5.
They have done a kidney biopsy and now want to do a nerve biopsy.  I am uncomfortable with the fact that I will probably always have numbness.  Just wondering if anybody has any experience with this.

Forum Moderator

Date Joined Nov 2003
Total Posts : 7056
   Posted Yesterday 7:01 PM (GMT -6)   
I have small fiber neuropathy in my feet. This type is not evident using convention EMG testing. I had to have a punch skin biopsy on my foot and on the thigh. This takes all the layers of the skin and counts the nerve endings. Anyway, in addition to this I had every blood and urine test performed in testing for disease causes of small fiber neuropathy. It came down to two possibilities and the only way to confirm a diagnosis was to to do a sural nerve biopsy.

I was also concerned about the permanent numbness issue since I already have a lot of it and did not relish having more. My neurologist was quite comfortable in leaving the decision up to me. He said that he was 95% confident that my neuropathy was caused by one disease and not the other. He also said that the nerve biopsy would not change my treatment or anything.

I do know that there are a couple diseases that really can only be confirmed/diagnosed by nerve biopsy. It that your case?
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

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