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In Memorium
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Join Date: Sep 2006
Location: So Cali
Posts: 661
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In Memorium
Join Date: Sep 2006
Location: So Cali
Posts: 661
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Lynxgal
Of course wait until you get bloodwork back on the CMT..... if it is negative and they have processed thru the other available blood tests for inherited PN - then I'd go after a biopsy.... there are many types of inherited PN's - CMT, HSAN group, etc..... if they know what you are dealing with wlll course save you wasted treatents, offer possible solutions, and also help with the prognosis and possible progression of the disease, helping you know what to expect..... they may also take blood from you and other family members if they cant determine the type - to help them identify a new form.....
On the biopsy - I had a sural nerve about 9 years ago - I dont know what gold standard to get same info is today - mine showed exactly the extent of both large and small fiber loss, the type of fibers affected (mylinated and unmylinated) - the degernation of the axons - schwan cell formation, etc... its without a doubt the most comprehensive and objective test I've had since the disease hit. (they also do the typical constant NCS and EMGS but for me - they have just showed the progression of the disesase - which they told me was coming from the biopsy - they were right)....
Hope they can easily diagosis you from blood work - but again - there are a number of inherited froms pn out there still be be discovered.... hang in there!
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