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Peripheral Neuropathy? Family history? Don't wait!
Again, my neurologist asked if there was a family history of peripheral neuropathy. Again, I had to tell him, "My brother … I think." (My brother had died four years ago.) When he asked if I could learn something about my brother's neuropathy, I called my sister-in-law. She didn't know. "You know your brother," she said. "He never liked to talk about such things." Those relations I remember of my mother's side of the family (my father's side had long since died before I was born) all had aches and pains and moved like they could have had some kind of neuropathy. Even when they were alive and we gathered for family get-togethers, three things were never to be discussed: religion, money, and health. I don't mind that we never talked about religion and money, but I sure wish my brother, parents, aunts, and uncles had been a little forthcoming about their health. Knowing a little something today might not be of any help to me, but who knows? My advice to everyone: If you've got family members you can still talk to, do! Don't wait like I did. Knowing what's ailing (or ailed) them may come in handy someday.
Ray (@ray666)
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@ray666 - I had tests done in 2018 for CMT due to my PN symptoms and the doc who specializes in CMT was surprised the results came back negative. I asked about genetic testing, and I was told by Johns Hopkins in Baltimore that you need several in same family with PN symptoms to do genetic testing. I think the doctor said at least 3 people. I have nobody other than a second cousin who has PN but his is attributed to multiple back surgeries, according to his doctors. His symptoms are way different than mine. Mystery continues...... Ed
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1 ReactionI had genetic testing for the neuropathy and it was inconclusive. My father always thought it was Charcot Marie tooth but it did not show up in my testing.
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1 ReactionHi, Ed. I also understand that I would need several people in the same family to make generic testing of any practical value. Unless I hear otherwise, I'm of a mind now to let the matter drop. My neurologist has asked me to try an EB-N5 supplement. Have you heard of it? It appears to be some super vitamin supplement, several vitamins, minerals, etc., all packed into a single capsule. I'll try it, although something tells me it's a moonshot. But I'll try it; after all, what have I got to lose––except for the $140 for a three months supply? And the promo lit for EB-N5 says you need to give it at least six months to see if it's doing anything for you. Okay, six months. That'll be New Year's Day. That means I can start planning on running in Denver's spring marathon. Only kidding!––as if you couldn't guess. My partner and I have friends coming over for dinner: a couple, and he's deep into trying to problem-solve his diabetes. He, like I, has discovered this strange crossover between diabetes and PN. I know from past get-togethers if he and I start talking medical stuff … well, pity anyone else at the table! LOL ––Ray
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1 Reaction@ray666 - On the genetic testing, I said to the neuro doc what do I do if I don't have 3 in the family with symptoms of PN. Answer is simple: No test, So, yes, I've moved on. And, on the EB-N5, new to me. Going forward, I'm hoping you can report back with some positive results.
Ed–– I don't generally put much stock in promotional blah blah, but the website of EMB Medical, Inc., the manufacturer, says EB-N5 [is] " … classified as [a] medical [food], a unique category regulated by the FDA. Medical foods address the metabolic deficiencies associated with diseases to help manage chronic conditions, including blood vessel and nerve damage such as peripheral neuropathy." If it weren't for the fact that it was my neurologist who suggested I give it a try, I'd probably have taken a raincheck. If my EB-N5 arrives on Monday as scheduled, I'll start taking it that evening. And definitely I'll keep you posted as I go along. ––Ray
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5 Reactions@ray666 - Ray -- Now .... this seems more interesting. I have an appt with my primary doc next week and will discuss with her. She works in conjunction with my neuro doc who I see in Sept. I did check out the components and I'm already on Alpha Lipoic Acid. As I've said in several postings, always best to get that medical clearance before taking supplements. Thanks for posting this info. Ed
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2 ReactionsLike @njed I read the ingredient list and was wondering if this is pretty much the same as ALA (which I haven’t tried because my Neurologist actually opposed for my case)
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1 ReactionHi, Ed (@njed)
I have also been taking alpha-lipoic acid for the past 4-5 months at my doctor's suggestion, 600 mg twice daily or 1,200 mg daily. Have I noticed any significant improvement––or any improvement, for that matter? I can't say, not without a PN biomarker.
It's possible, however, that I'm still without pain, and my balance, while possibly a little worse, is not a heck of a lot worse than what it was a year ago: it's possible my daily dosing with alpha-lipoic is at least holding any PN progression in check. That would be something.
I noted in the EB-N5 literature that takers are encouraged to keep daily track of how they're feeling using a simple 1-to-10 scale, 1 meaning "I think I'll just stay here in bed and play it safe," and 10 meaning "I'm ready to run the Iron Man." I know I will feel foolish doing that, but I'll do it.
Tomorrow, when I pop my first EB-N5, I'll assign myself a modest 2 or 3 on the 1-to-10 scale, meaning, "Okay, I'll get out of bed, but I'll still hang on the bedpost." Then maybe in three months, I'll be a … what? a 5 or 6? I can only wish!
Ray (@ray666)
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2 ReactionsHi, Debbie (@dbeshears)
It can be pretty dizzying how one doctor will endorse and another advises against the same drug, therapy, or supplement (not that a guy with PN needs to be made any dizzier than he already is!). When we'd tested positive for Covid, each of us conferring with our PCPs, I and a dear friend found ourselves on the opposite side of the Paxlovid advice divide: I was given a prescription, but she wasn't. My PCP was pro Paxlovid, but hers was anti.
Ray (@ray666)
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1 ReactionI agree with you totally! I know families that never divulged some pretty bad medical backgrounds that were innocently passed on to their children. My sister had fibromyalgia and now I have pretty severe neuropathy-is there a nerve problem on my side of the family?