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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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Hi, bettyg81pain (@bettyg81pain)
I've often wondered where that shyness comes from, that reluctance to talk about medical matters, not that we'd want dinnertime talk to be about nothing but everyone's aches and itches, but a quiet indication that a member of the family was at least willing to discuss a health issue that could be of critical importance to other members of the family. My family's reluctance to talk about such things, now that they're all gone, has left me with nothing but anecdotal information.
Ray (@ray666)
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1 Reaction@ray666 - Ray, on your comment about the ALA - I too was on 1200 mg daily for about 2 years and did not see much of an improvement. Or would the PN be worse without the ALA?? I mentioned to my doc at one time that I feel the progression of PN takes place in what I refer to as steps. Unfortunately, none of the steps are upward, they are going in the opposite direction. I feel my numbness is about the same as it was a year ago, but the balance is definitely worse...which I have noticed will sort of hold at one level for 6 - 9 months and then, another step downward. The cause of the PN (good luck!) could also dictate the speed of the progression. I went to 600 mg of ALA for a half a year, 4 months ago, went back again to 1200 mg daily. Now, I'm taking the R-ALA. No noticeable difference but it is not worse in past 4 months. So, not getting worse in 4 months....is that an improvement? Not sure if others have these "steps" and when I see my neuro doc in Sept., this will be discussed. My non-medical thinking is this, if ALA or R-ALA can slow down progression, isn't that a clue for stopping it? Not a cure, just stabilize it. Best of luck with your EB-N5 as well.
Hi, Ed (@njed) – I know what you mean by one step up, three steps down (no handrails, either). That's how it's been for me. I see my neurologist, the one who suggested EB-N5, next on 8/8. I'm already prepping with questions. He also wants me to meet with his PT supervisor, who, he tells me, has a lot of experience working with people with PN. I've requested only a one-hour sit-down to start with. I've wasted too much $$$ in the past on PT that got me nowhere––nowhere but a few reams of useless PT handouts that I still have lying around the house here, there, and everywhere. – Ray (@ray666)
My initial diagnosis 7 or so years ago was fibromyalgia, which I reluctantly accepted. I knew my symptoms didn’t match that diagnosis. I actually have SFN. Your sister may have had neuropathy as well but never went further than accepting the fibromyalgia diagnosis. I had some interesting talks with my 91 year old Dad recently, who has been in pain as long as I can remember, but has never had it assessed or treated. He just bears it, and is very active. His Dad was a farmer, and was also affected by some disabilities with his “nerves”. My Dad was truly surprised at my assessment of possible family traits. My sister has similar pain to me, although not as disabling.