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Old 10-22-2016, 09:41 AM #1
mskari85 mskari85 is offline
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mskari85 mskari85 is offline
Junior Member
 
Join Date: Jan 2016
Posts: 65
8 yr Member
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Quote:
Originally Posted by LouLou1978 View Post
HI Summerfun - i am certainly no expert but as far as i am aware the genetic neuropathies are very rare. I've had the scn9a and 10 gene tested which came back negative. The professor i saw said that my skin biopsy was not in keeping with a genetic neuropathy as the biopsy would show a die back of nerve fibers - but if you have a die back of nerves doesn't mean that you have a genetic neuropathy - there are lots of causes. He just pointed out to me that my biopsy was in keeping with an inflammatory neuropathy. He also pointed out that with an inflammatory neuropathy it was strange that none of the markers for inflammation were raised in my blood tests as they normally would be with this type of presentation. At the moment there is a lot of stuff on the internet about SCN9A & 10 sodium channel dysfunction and some blockers are in clinical trials - so even though there is no treatment at the moment , hopefully in the future there will be.
Just wanted to note: I have an autoimmune disease (RA) with a positive ANA - I also have only very slightly elevated inflammatory markers AND a progressive sensory polyneuropathy that has taken over my entire body, assumed to be inflammatory. I actually think my inflammatory markers are elevated only with my RA because it has gone down significantly as my medication has kicked in and my joint pain is greatly decreased. So, that really does go to show that you don't really need the inflammatory markers to have an inflammatory neuropathy.

thanks for your post, great information
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