Peripheral Neuropathy? Family history? Don't wait!

Ray - I recently moved back to SC where I'm closer to the Medical University of SC. The first suggestion was to volunteer for some ancestry type DNA test which would show susceptibility to a couple general type of health risks (I did it, all negative). Then my cardiologist suggested some genetic testing of sorts (saliva/swab kit is now in the mail being sent for me to do at home). It seems like the genetic testing department is big here! I actually have a routine cardiologist appointment today, and though I know it's not his department, will ask him why the Neurology department hasn't recommended any DNA testing to help understand any possible genetic links! (Like you, family that might be suspect are no longer alive)

My father had PN and so do I, since age 40. It’s been progressive. One of my brothers has it too.

Yup, it's in my family too along with diabetes and a few other nasties like RA. Add to that what I heard from a wise 80 year old neurologist speaking at one of our Minnesota Neuropathy Association meetings - "Everyone will get neuropathy if they live long enough cause nerve cells die too" or something like that, you know how it is with senior citizen memory 🙃

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

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)

" … you know how it is with senior citizen memory."

I forgot.

LOL

Cheers!
Ray

As you and some others know, my father and one sister had it and I watched their decline.

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.)

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.

I live in a progressive town with an Institute for Biotechnology. I was able to have genomic testing done for specific “rare” (or not so rare) diseases, since my sister shared a lot of my symptoms, and my Dad and Granddad some of them. Nothing turned up, but they assured me that I could get a phone call in several years, as new genomes are discovered. Then my sister could be tested, and my younger son, who is starting to have some pain, etc could also be tested. It involves bloodwork, not just a cheek swab or hair sample.