Does anyone find that a type of shoe helps your foot neuropathy?
I am on a constant quest for shoes that don't kill my feet due to the neuropathy. I find that Spencos and Wolky shoes seem the best. Are there any other suggestions? Shoes can be just crippling for me. Horrid.
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@bluesky222 I don't recall the MA being alarmed by the "shadow." I believe she thought it merely "interesting" in light of my admission of long-ago drinking. She certainly didn't link it to PN. PN wasn't even on the radar at the time. Since receiving my PN diagnosis, I have mentioned the drinking to my various neurologists, thinking one at least would cry, "A-ha!" but none has. It may be, as you say, PN as a result of alcohol generally comes on quickly. When I mention 30 years of sobriety, the most I'll get as a response is, "Oh, well, alcohol may have been a contributing factor, but a minor one, but certainly it's not THE factor."
Thanks for your reply, Ray. I appreciate it!
New topic: Have you heard of the Foundation for PN Research Registry? It is a registry of more than 2,000 people who have voluntarily shared their PN information for research purposes. It is run by doctors at Johns Hopkins University and has about six other universities throughout the U.S. that help collect information about PN. I'm trying to find out more information about it. I hope to participate.
@bluesky222 - Just another example of how unsure Neurologists are in understanding causes and symptoms of PN. I have shared just about possible idea I’ve had with the Neurologists I’ve had from the different states I’ve lived in over the 7 years I’ve had this idiopathic thing. Anything from chemical exposures throughout my career to possible poor drinking water in vacation rentals to eating a lot of seafood. I even asked to be tested for arsenic poisoning since there were no good explanations. When I have suggested any types of my beer/wine consumption over the years, they’ve ruled it out because I did NOT have gradual or worsening symptoms over a period of time. They said the numbness & tingling usually presented awhile then would gradually get worse to varying degrees as time goes on. I guess also because blood suggested no vitamin or nutritional deficiencies that usually go with extraordinary alcohol use, and probably other symptoms. They also are unable to know for sure if an infection I had at the time my PN hit me had anything to do with it. My point is that there are a only a few causes of PN that doctors seem to be sure about in diagnosing, and for the other causes, doctors seem to be grasping at straws like we are. I finally got to @njed state of focusing on how we can improve or maintain the hand we’ve been dealt vs wasting valuable energy on trying to figure it out ourselves since trained Neurologists aren’t able to even get consensus on what we might think are the simplest things. They seem to agree that once you know you have PN, that alcohol won’t help it, so I’ve chosen to avoid it altogether now. I can’t say it helped anything since it had been awhile since my PN hit that I had a glass, but don’t want to test to see if having one now might make me worse. I’m going with Ed’s idea that we probably got it from chasing mosquito spraying trucks in our youth 🙂
Ha ha. I like that theory about mosquito spray trucks. How about my vice - eating some sort of milk chocolate every single day for at least 40 years? Oops, that doesn’t explain why my sister, who cooks every day, eats tons of fresh vegetables, and hasn’t had fast food in years, also has this neuropathy. So I think I’ll stick to my chocolate treat.
Debbie, to clarify: Your neurologist said alcoholic neuropathy would come on gradually, over a period of time, and worsen? I've had two neurologists say alcoholic neuropathy comes on quickly. Thanks for your comments to just accept it and move on with my energies. You are correct!
Sandals allow foot to bend without wrinkle of shoe box to push down on neuro affected feet.
Thicker sole brands give comfort underneath. Even shoes with high box areas are now made with stiff fabrics that cause wrinkle pain. Ortho brands no different that way. Ortho sandals with rear strap and ankle strap to secure slipping off sandals needed for safety Very soft thick stretchy socks from $1 store help warm feet affected by winter cold and feel comfier than bare feet in sandals.. Do not use thong style sandals.
To be honest, I’m not sure that we had any discussion was about a specific level of drinking, what type of alcohol, or when in life consumed. It’s been several years ago and with my sudden onset 7 years ago (10 days from weakness to wheelchair), but I recall them saying alcohol would have produced warning signs well beyond 10 days, more like months or years. But I do not know if there would be a difference for “alcoholic “ vs “social “, and I didn’t ask. I think it’s natural to wonder sometimes if we’re exceptions to the rule… we all have heard of that with some certain diseases. I guess I’ve exhausted myself with wonder finally. For a long time I wanted to blame myself, or the environment, or others, then finally the doctors for not knowing. Finally with some very good folks here, I was able to shift my focus in a more positive direction in just trying to learn and act on what I might be able to do now to get the best quality of life. We all would like to learn from knowing our cause, but I’m accepting that it’s not going to happen for me. It sure has been a journey for all of us!
Debbie, how terrible for you to be in a wheelchair so quickly! I will quit any whining! You sound like an intelligent, strong person. Thanks for sharing and inspiring the rest of us!
Thanks @bluesky222 - the wheelchair lasted 6 months but fantastic PT and determination on my part got me out of the wheelchair and I am blessed now to manage my disability pretty darn with a well considering. I'll take my walker over that wheelchair any day. This is such a mysterious disease, and so unfortunate how it's so hardly understood. There's such a wide array of disabilities (or abilities) we have here, but every single one of us have had major adjustments to the way we once lived or felt. This group has been a huge help in letting us share ways to adjust & cope. There have been so many ideas and solutions that I (or my medical team) would never have thought of. The experience here has been what's helped me these past couple of years that I stumbled upon this site on my own! Best wishes to you!
@dbeshears1 _Ahhh....yes, the bug spraying trucks. What a memory you have and that was, in fact, told to me by one neuro doc. She spent time at one of my exams asking me about the past and I had heard about DDT being one of many possible causes of PN. When we were kids back in the late 50's and early 60's, we did chase the bug spraying truck around, thought it was fun. Right away, the neurologist said OK, that could be it. I feel she was trying to resolve the question in my mind as to how I ended up wth PN, never being tested at all for toxins, not that they would show up after 60 years. It is just one of the things that ,... well, could be?? As you say Deb, we will never know. And, even if we did know...where is the fix? Perhaps someday. Ed