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Old 04-28-2009, 07:37 AM
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BEGLET BEGLET is offline
In Memorium
 
Join Date: Sep 2006
Location: So Cali
Posts: 661
15 yr Member
BEGLET BEGLET is offline
In Memorium
BEGLET's Avatar
 
Join Date: Sep 2006
Location: So Cali
Posts: 661
15 yr Member
Default Genetic PN

Hi again,

There are so many types of inherited PN yet to be identified (yes, there are tests for CMT - some types, HNPP, some forms of HSN an HSAN etc...) - the trick is trying to nail them all down... I've been asked to have family members participate and get tested by docs who were trying to insolate the speicific mutation - but they are afraid of needles, etc... I think its more of the disease actually that is causing the fear.... but in any case - based on your response to meds, known family history, severity and progresision of the disease, biopsies, other tests etc. can give them very good clue to whether PN is inherited or not. This can help of course with any possible treatment, or at least prognosis as to what you can expect for the course of the disease. Also, IVIG may help some with inherited PN. In any case - they may learn from you if its a type not yet identified.... and be able to help other patients and family in the future...
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