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Originally Posted by Susanne C.
I believe Hopkins developed the procedure in the first place. Mine was done there and the report stated both number and condition of fibers as you said. Results were devoid at ankle, reduced at knee, and segmented and breaking down at upper thigh. The condition of the fibers is an important clue to the progression. It clearly indicated an advanced, progressive, length dependent SFN. Both the doctor at Hopkins and my local neuro said it was pointless to repeat as it is progressive. ( I have hereditary neuropathy, CMT) my EMGs are also abnormal, so I have a diagnosis. A diagnosis doesn't always mean there is a treatment.
If you are in any doubt about results definitely consider Johns Hopkins.
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You are correct, Susanne...Hopkins developed the skin biopsy. Not only is the condition of the fibers important for progression, but also when some cases that density is normal, yet condition shows signs of damage. This can happen in autoimmune presentation of SFN...especially at the beginning, when proper diagnosis is so crucial for early treatment options.
Second opinions are not just for doctors...second opinions can be for biopsy interpretations as well. Especially, if you don't think the testing/evaluation/sample/etc was handled or done properly. It doesn't matter who did the biopsy, or what reason you want another opinion...it is your right to have it done to make sure the correct diagnosis is being made and your treatment reflects that Dx.