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Idiopathic Polyneuropathy: My endless journey to a near-diagnosis …
Hello!
I have been here before. Several times each time posting under what seemed to be the correct topic at the time, such has been my maze-like journey to a diagnosis. I'm not there yet (that 100% positive diagnosis), but I'm closer. Only yesterday, I met with my neurologist, and he came as close as he dared come at the moment, calling my ongoing balance problem idiopathic polyneuropathy. Since I also have some cervical stenosis and am already scheduled for an MRI in two weeks, my neurologist suggested we plan to talk next after he has had a chance to look over the results of the MRI. This journey to a diagnosis has been a long one. I'm curious to know if others have had a similar experience. And what was the outcome? I'm doing PT for balance and taking B-12 and alpha lipoic acid (the neurologist's recommendation). But are there other things I might try at this point, something I might ask my neurologist about? I believe others' experiences with this condition would be of immense help.
Ray (@ray666)
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Hello, Rob (@rob39)
It seems the most we can do is just keep doing those things that we're still able to do and that at least maybe slow down any further progression. For the past four months, I've been taking an at-home (online) physical therapy workshop specifically for balance. I am not sure if it is helping, not in any spectacular ways anyway, but it may be helping to keep what neuropathy I have confined (for the time being) to my feet and below my knees. Reading the many posts here on Mayo Connect is helping, too, to educate me. Until recently, I had no idea what my balance difficulties were all about.
Cheers!
Ray (@ray666)
Do it!! I know how very inconvenient it is, how there’s a lot of gambling on the parking/walking/seating situation, and of course your safety and endurance. I know we have to pick our battles on what’s best to maintain friendship and any semblance of a social life, but I don’t think we should force them to always come to us if we’re able to meet them half way once in awhile. It helps show that we’re given to help sustain relationships and we know they just don’t understand how this disease makes it so hard on us. You know what’s best. For me, I absolutely had to give up shopping with my girlfriends; it was a timed sporting event for them and I was making the team lose. We also had to give up the pro football seats we owned for 20 years; the seats we owned were the absolute greatest for those with legs who could walk up & down the 20 rows required to get to our front row aisle seats on the 50 yard line. We were unable to get a trade for handicapped seating, and if we did, they would have not been good seats. So I’ve given things up, and my husband made sacrifices, so when I find opportunities to socialize that seem less taxing, I jump at the chance!! Actually, I’m unable to jump… but coffee, meals, movies, even bowling or things I can watch, I try hard to get out, and touch anything available if I need to get around that way. I hope you find you might be able to do this!
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3 ReactionsI have idiopathic neurapathy in both feet, did you get any results from the mri?
Hello, Debbie (@dbeshears1)
I subscribe wholeheartedly to the spirit of your message! I have never been the sort to decline invitations to do things –– from grand adventures to domestic chores around home. As I've gotten older, and now with considerations of my neuropathy, I have grown even more fervent in my belief in doing. Reading the paper only this morning, in an article about choreographer George Balanchine, I couldn't help but nod approval to read what he was known to say to his dancers: "Don't think. Do!" (Thinking is important, too, but so is doing, maybe more important, and overthinking can spell disaster.) I'm sorry my reply has to be short. I have a phone company technician here, and I'm told he needs to shut off my Internet wireless temporarily. I want to post this before he does. Thank you, thank you for your uplifting post!
Ray (@ray666)
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3 ReactionsHi, Randy (@randymor)
I will be getting that MRI on 4/11, with the results probably not for several days, not until my two neurologists have had a chance to look at the MRI. But I will post here whatever I might learn. Good luck with managing your neuropathy!
Ray (@ray666)
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1 ReactionPlease let me know how the mri goes.
Randy54
Ray - hope you went for coffee. I too have come to points where I don't know if I should do this or that. Anyway, I usually give it a try unless I sense danger and when I can do it, I have a great feeling of accomplishment. Ok, I can still do that! Hmmm. So, for me, I'd see that walk as a challenge and usually the end result will justify the effort in several ways.
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5 ReactionsReminds me of my running days. The marathons and halfs, 5 & 8 & 10k’s, all grueling, sweating, wondering “why the heck am I doing this again?” moments; until you cross the finish line, and the high you felt for finishing made every drop of sweat worth it 😊
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1 ReactionWhy do women in their 60’s still use shopping as a social event? I know my friends do. With Dysautonomia and pain, that is one of the least fun ways to spend a day. Plus I’ve gained weight from Tegretol, so clothes shopping isn’t a pleasure. I’ve given up many social activities because of unpredictable dizziness, fatigue and diarrhea. I don’t need a wardrobe of beautiful clothes. Don’t wear the necklaces and bracelets I have, because they irritate me.
My chosen activities these days are mostly volunteer work. I guess since I had to give up my career, and know what suffering feels like now, spending my time on things that are meaningful is very satisfying to me. I foster kittens in my home, drive special-needs adults to the nail salon, pack food bags for children at church ( sitting down if needed - the church staff understands). When my friends do an hour long power walk that I can no longer do (and no, they’re not interested in slowing down to match my pace), I show up for the coffee and visit after.
Life goes on. The future - even six weeks from now - is unpredictable. I don’t like it, but since I’m generally optimistic, and have a strong Christian faith, I just keep adapting and doing my best.
But shopping in boutiques fo hours to buy clothes and jewelry I don’t need? That was a pretty lame hobby even when I could do it!
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3 ReactionsI’m not 60 yet, but couldn’t agree more that shopping to me was a chore at any age and ability! My friends and I only went we had had a specific need, and wanted in and out quickly, that’s what I meant by timed sport that I became a hindrance. I did know many people though whose Saturdays were all for 8 hours of mall browsing, and I never got it at ALL, and those types of shoppers angered me when they were in the way of me knowing exactly what I went out for while they’re just lollygagging and in my way lol. The internet is a huge blessing for shopping even when I had legs, though I admit I buy more ill fitting things now with the hardship of either returning or just eating the cost and donating. We pick our battles I guess.
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