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← Return to PN: From Anger to Acceptance
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@njed – Ed, I wish I knew if the EB-N5 is helping. Others ask me, too, and my answer is always the same. I'm prepping for my next neurodoc visit (2/28) and that EB-N5 question is at the top of the list. This is the same fellow who had me do a genetic test (cheek swab); I'm eager to learn the results of that test. (My brother, who died three years ago, had terrible neuropathy, but that's about all I know. At the time, I didn't have any PN symptoms, so I never pressed him for information. Now, of course, my neurodoc is asking.) – Ray
Replies to "@njed – Ed, I wish I knew if the EB-N5 is helping. Others ask me, too,..."
Ray - I did a cheek swab last month as well and awaiting results. It was sent to a lab called Variantyx, as they can also do a genetic test for some that are ataxia related as well as CMT specific. I didn't ask for it, but my PCP offered it, so I thought - why not? If it helps discover anything that can help me my bloodline or research, I figure it's a good thing.
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Ray, the fact that your brother had terrible neuropathy would have to be a smoking gun. I have no known family members with PN. That is interesting, and I'd ask if there are any other genetic testing that might be considered. I had CMT testing in 2018 and it came back with no markers. Ed