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Old 08-22-2016, 12:52 PM #11
LouLou1978 LouLou1978 is offline
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Join Date: Feb 2015
Location: UK
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LouLou1978 LouLou1978 is offline
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Join Date: Feb 2015
Location: UK
Posts: 153
10 yr Member
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Quote:
Originally Posted by Healthgirl View Post
Well if there is no treatment to cure it, I guess you would be the one they would pick apart. From what I'm learning, those of us who are predisposed, all it takes is a trigger from an exposure to flip on the gene that can cause symptoms like these. I will keep everyone posted when I get back from the geneticist next month.


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Hi Healthgirl,

Thanks for your reply.

I wrote to a professor of neurology who deals in genetic neuropathies. He advised they are in the early stages of their research. He did say that if my sister's skin biopsy came back as positive then he would review us but he said he can't guarantee it would help with our clinical care.

I was also wondering, could we both have some sort of genetic auto-immune type of issue. I mean if it was then could the ivig still help? The neuro insisted that if it was genetic IVIG wouldn't help.

Please also keep us up to date with your investigation . I hope it is all going well so far.

Thanks
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