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hypotemusea (@hypotemusea)

Small Fiber Neuropathy and genetic testing?

Neuropathy | Last Active: Oct 16, 2020 | Replies (28)

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@hypotemusea

Thanks! This is really helpful! I searched for keywords like SCN9A and SCN10A but didn't find much in terms of people's experiences of undergoing genetic testing. My father (in his late 60s) has some mild neuropathy in his feet, and his mother had some diabetic neuropathy. I assumed that my father's mild neuropathy is an age-related thing but maybe it isn't? As far as we know no one in my family has had the same sort of neuropathy at a young age.

My geneticist seems willing to help — I had a previous appointment before where we discussed testing for Ehlers-Danlos, but I didn't know until recently that apparently 30% of people with SFN have the SCN9A genetic mutations (I couldn't find the research source, although it's mentioned on the websites of the genetic testing labs) and 5% with SCN10A… Even if the figure is not entirely accurate, 35% sounds significant enough for me to consider testing. And preliminary research has shown correlations between Ehlers-Danlos and SFN diagnoses too.

My doctors didn't try gabapentin. Lyrica was the first and (only?) nerve pain medication that I've tried. I'm seeing a new neurologist soon who specializes more in PN issues, so I'll definitely bring it up to him.

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Replies to "Thanks! This is really helpful! I searched for keywords like SCN9A and SCN10A but didn't find..."

@hypotemusea
I didn't know how useful that series of posts by the other person would be, but they were the only one I had heard mention genetic testing for neuropathy before you (and Rachel @rwinney , who also said she had it done).

You comment that perhaps your dad got neuropathy simply as a result of getting older is, I think, not valid (I could be wrong). I have known a lot of older people in my life and not one of them ever mentioned having neuropathy. In fact my wife was the first person I had ever known that had it (result of chemo in 2014). That said, I am finding out that MANY different things seem to cause neuropathy, some as unexpected as simply getting an injection or having a vit. b12 deficiency. Weird, eh?

I have not heard or thought of a good reason for genetic testing for neuropathy. Now if identifying the exact gene could result in some type of treatment involving manipulation of that gene or its DNA, that would be different. Otherwise, of what value would knowing the gene have? I'm actually asking whether you know; just because I am ignorant of a reason doesn't mean one doesn't exist.

I hope you can find some relief from your pain. Don't give up on TCM (Chinese medicine) or other alternative treatments for your pain. Do consider or look into med. mariju. (when back in the US) and kratom, or possibly ketamine. Also look into low dose naltrexone (LDN) and palmitoylethanolamide (PEA) both newer treatments some people are starting to get benefits from. (I'm just throwing out things you can research on your own if you want to.) One of the best things you can do for your health is cut down on sugar as much as possible, just FYI. Sugar is a beast on your body.

I hope you find the answers you are after my dear. It's sad enough when anyone has PN, but especially so in a person who's only 27! BTW, if you do ever discover the cause of your PN I'd love to know what it was.

Best to you, Hank

Hello @hypotemusea, @jesfactsmon, @mjpm2406 I found Lyrica to have the identical side effects that Gabapentin did. But I don't think it helped as much with the pain. Hope it works for you. It does for a lot of people. Many blessings, fondly, Sunnyflower