1. < Neuropathy

Peripheral Neuropathy? Family history? Don't wait!

Posted by Ray Kemble @ray666, Jun 28, 2023

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)

Interested in more discussions like this? Go to the Neuropathy Support Group.

Debbie | @dbeshears1 | Jun 30, 2023
In reply to @ray666 "Good morning! I'm only loosely familiar with DNA testing. Friends have had it done for a..." + (show)
@ray666

Good morning! I'm only loosely familiar with DNA testing. Friends have had it done for a variety of different reasons. However, I can't think of even one who had it done purely for medical reasons. The friends I am thinking of got it done simply out of curiosity about their family tree. I heard that DNA testing only to learn the names of your ancestors isn't comprehensive enough for useful genetic information. Do you know if that's true? And don't blood relatives need to be involved for genetically meaningful information? My parents are dead, as are every member of their generation and earlier generations (my grandparents). My only brother is dead. I have a slew of nephews and nieces running around someone (in & around NYC; I'm in Colorado). Boy, would they be surprised to hear from me! "Crazy Uncle Ray wants us to do some DNA testing." LOL, I think I'll ask my neurologist about this. One way or the other, I'm curious to know if he has an opinion on DNA testing. ––Ray

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Ray - I think they can test enough to see if a marked in me could be out of whack to show the chance of it being genetic. Having a surviving blood relative submit would add value to predict family risk. Heck, they can narrow down to paternal vs maternal if they found something. The main question is whether other family members want to know, and pass knowledge or testing needs to other generations…

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1 reply
Debbie | @dbeshears1 | Jun 30, 2023
In reply to @ray666 "Before I'm even asked if anyone in my family had neuropathy, Im asked––usually when filling out..." + (show)
@ray666

Before I'm even asked if anyone in my family had neuropathy, Im asked––usually when filling out that first-visit paperwork––of what did all deceased members of my immediate family die. I always find myself best-guessing. My brother, who died only a few years ago, and who had neuropathy (so I'm told), died of kidney failure and some sort of all-over system breakdown. (Covid prevented me from going back East to be with him.) My parents, grandparents, et al., all died decades ago. My father's death certificate reads, "hardening of the arteries & underlying pneumonia;" my mother's certificate: "diabetes, kidney failure." That's where my best-guessing ends. But I can't help but wonder: did any have neuropathy? Something tells me it wasn't much diagnosed back then. (Nor is it, perhaps as much as it should be, today.)

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I struggled with that conversation with my cardiologist yesterday. I think they have to know for sure there was knowledge of anyone related to me having cardiomyopathy or any other heart issue before being able to do the genetic. If there wasn’t anyone else in my family with a remote possibility, insurance probably wouldn’t approve the test.

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Ray Kemble | @ray666 | Jun 30, 2023

Good morning, Debbie

That's a speedbump, definitely, the need to have proof-positive of a now-deceased member of the family having had a particular malady. That's the spot I'm on, too, with my "understanding" that my mother not only had diabetes but that diabetes was one of the leading causes of her death. I'm sure it seems odd to others when they hear that I don't know, but my brother (now also deceased) in New York and I in Colorado had an agreement that when our father was "fading" (dementia), I would fly home to New York and be his primary caregiver; then when our mother could no longer live on her own, my brother would be her primary caregiver. My brother and I fulfilled our agreement. However, as a result––and now with my brother no longer able to ask questions of––good, solid family medical history is fragmented. My insurer, too, isn't much interested in fragmented medical history.

Ray

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mitfit | @mitfit | Jun 30, 2023
In reply to @ray666 "Good morning! I don't know for sure, but now that I have PN and am learning..." + (show)
@ray666

Good morning!

I don't know for sure, but now that I have PN and am learning more and more every day about PN and other neurological disorders, I'm thinking back to my family and how they appeared and moved around. Other than my brother (who never spoke in any detail about what was hobbling him, other than to say in an offhand way it was neuropathy), my parents, grandparents, et al., remained tight-lipped about all their illnesses. In my family, everyone was obviously suffering from something, but if asked, "How are you doing?" would always answer, "Oh, just fine!" Two days later, they'd be in intensive care. The next day they'd be dead. That's how they lived––and ended––their lives. Not exactly an example I want to follow. LOL

Ray (@ray666)

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Oh gosh! It’s best to share.

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Ray Kemble | @ray666 | Jun 30, 2023
In reply to @bjk3 "Hi Ray - Barb in Iowa here. I did the 23andMe a couple of years ago..." + (show)
@bjk3

Hi Ray - Barb in Iowa here. I did the 23andMe a couple of years ago because I was curious about the results of that same test that my married granddaughter took a couple of months prior (wondered if a particular one of her results would also show up on mine, and it did, answering a long-held question that I had no relatives in my generation to ask). The test doesn't really ascertain diseases or conditions as far as probable diagnoses but will state possible susceptibilities that may exist based on what some chromosomes present. They are very good about updating you as to new potential relatives, since they are constantly receiving new test inquiries. Names may or may not be supplied - sometimes just initials, depending upon what that person gave permission to share. Everything is kept very confidential - you alone determine what you wish to make known within the database. They also update you as to medical trends that may pertain to your DNA as they receive results from others who share same. And every so often they e-mail you asking you to complete a questionnaire regarding similar questions you answered when you originally took the test. Of course you are free to ignore the questionnaires. My granddaughter has completed none, as she has no spare time, but I have probably completed about 75% of them because I know the answers help in their research, and I do have the time! By the way, my college age grandson, brother to said granddaughter, took the test a few months ago and his results confirmed ours. I have enjoyed this process.

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Hi, Barb

My partner and I have been on the cusp of trying 23andMe. This discussion may just tip us over into doing it. Several of our friends have, out of ancestry curiosity, but none to acquire proof-positive medical information, not so far as we know.

Ray

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Ray Kemble | @ray666 | Jun 30, 2023
In reply to @mitfit "Oh gosh! It’s best to share." + (show)
@mitfit

Oh gosh! It’s best to share.

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My family––and it may be generational, for all I know––had a highly selective approach to privacy. Matters of which I'm intensely private, they were wide-open about; others matters, which I see as potentially helpful to others––like one's experience of a medical situation (without being a bore! LOL)––they were as guarded about as could be. I'll be honest; it wasn't until now and my managing my PN that I've come to realize how a little judicious sharing of medical information might be of immense help to others.

Ray

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Ray Kemble | @ray666 | Jun 30, 2023
In reply to @dbeshears1 "Ray - I think they can test enough to see if a marked in me could..." + (show)
@dbeshears1

Ray - I think they can test enough to see if a marked in me could be out of whack to show the chance of it being genetic. Having a surviving blood relative submit would add value to predict family risk. Heck, they can narrow down to paternal vs maternal if they found something. The main question is whether other family members want to know, and pass knowledge or testing needs to other generations…

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Hi, again, Debbie

I think about these things (DNA testing), not so much for my sake (so far, no indication that my PN is genetic), but for my nephews and nieces, and how my getting tested could help build a storehouse of information of use decades from now. I generally talk to my sister-in-law on Saturdays. (She's 1,800 miles away.) When I speak to her tomorrow, I'll ask her if she thinks my getting tested would be welcomed by my nephews and nieces.

Ray

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Ray Kemble | @ray666 | Jun 30, 2023

I find value-added in all this talk about genetic testing. It has led me to think outside of the frame of myself and my own day-to-day managing of PN, and to think some of how enterprises like genetic testing could be of real help to others decades from now.

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bjk3 | @bjk3 | Jun 30, 2023
In reply to @ray666 "Hi, Barb My partner and I have been on the cusp of trying 23andMe. This discussion..." + (show)
@ray666

Hi, Barb

My partner and I have been on the cusp of trying 23andMe. This discussion may just tip us over into doing it. Several of our friends have, out of ancestry curiosity, but none to acquire proof-positive medical information, not so far as we know.

Ray

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Hi Ray ~ In my experience with 23andMe I only got proof positive about ancestry history, not about anything along the medical lines. A couple of things to know is that first, the person answering the questions may not know definitively the answer, and also you can skip answering anything you don't want to disclose or feel you can't be sure of, and that may skew the outcome that you are hoping for. Still, I'd do it again - and I guess I still am since I respond to most of the update questionnaires.

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Ray Kemble | @ray666 | Jun 30, 2023

Hi, Deb – In the meantime, a friend phoned. She and her husband have been doing the 23andMe questionnaires, as have their college-age children. My friend said that she and her husband still enjoy doing the questionnaires, although their children confess to leaving them only partially done. "Our children are 'immortal,' you have to understand," my friend said, laughing. – Ray

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