Quote:
Originally Posted by en bloc
Just so everyone here knows: If you question the accuracy of your biopsy, then by all means have it re-read. Johns Hopkins accepts tissue samples done outside and their pathologist will read them again. Tissues are frozen and stored for long time periods, so no problem in having this done. In many cases, insurance will pay for these 'second opinions' and this includes second readings...you'll have to check with your own insurance company.
I also can't emphasize enough to have the morphology (condition of the fibers itself) checked...and Therapath does not include this as part of their services (they only check density). Johns Hopkins does...as does other major institutions. This is so important, especially if your biopsy was negative and you still don't have answers...but you still have symptoms.
Just a thought.
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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.
01-26-2016, 10:24 PM
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