Quote:
Originally Posted by Susanne C.
My skin biopsy was done at Hopkins two years ago, and the results were as follows:
Ankle- devoid of nerve fibers
Above the knee- reduced in a patchy distribution
Thigh- normal, but segmented and breaking down
That along with a confirmation of SFN is all that appears on the lab sheet. There were no percentiles, etc. This way of expressing the results doesn't sound like anyone else's, but it was one by a Hopkins neuro at Hopkins, says Hopkins lab on the paper.
Other tests show large fiber neuropathy as well with muscle loss. I have CMT, with no sensation to above the knee. Hands and arms are also affected, with pinched nerves.
The neurologist at Hopkins asked if I wanted further genetic testing and a spinal tap. I said no, he agreed, and it was "goodbye and good luck".
I am curious if anyone else has results expressed in this way.
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I have not seen my results yet. I know that my specimen was sent to John Hopkins. I will post here when I have it.
As you may have read my post, my neurologist advised me (through phone)that my skin biopsy result is negative. I am thankful about it but this makes me so confused because I have the symptoms of a PN.
I got a similar position from my doctor too when I asked him if I need to have more tests. He said "Lets just wait and observe."
The good thing is we have this forum. Reading the posts here gives me more information - more information than I get from all my doctors combined.