Idiopathic Polyneuropathy: My endless journey to a near-diagnosis …

Hi Ray - The only prescription medicine I take for PN is Gabapentin. It helps minimize nerve pain discomfort and the heat/cold intolerance I can get in my hands and feet. Doctors like to advise depression/anxiety meds, but I can’t afford the dopiness side affects and the increased risk of more imbalance & falling, so I try to do positive mind exercises instead. I’ve held back on ALA because I get low blood sugar and my last Neurologist didn’t know if it was safe. I have a new Neurologist appt in my new state next week & will ask her knowledge; I’ll also ask about an MRI that I’ve never had in my 6+ yrs with PN, so congrats to you for getting one scheduled! I take B12 and when I stopped it once, felt bad after a few days and restarted it. I take Magnesium too. I liked having 5 Accupuncture treatments I had- it’s hard to describe the relaxation my nerves and mind seem to get from it, but my big help is the PT; continue as much as you can unless you think you’re disciplined enough to keep the exercises up on your own. Even if you do, I’d get a PT follow up once in awhile. This forum has given me a lot of help on lotions, supports, shoes etc. keep reading, stay positive, and best of luck!!!

Good morning, @seanmacbeth
Thank you both for your message and your suggestion that I look into Protocol 525. Moments ago I found a website devoted to Protocol 525 and I will look it over carefully when I have got a bit more time later today. Also for your suggestion that I up my daily water intake to 80 oz. I started that this morning. I will let you know how things progress. Again, thank you for your advice!
Ray (@ray666)

I too am taking alpha lipoic tablets along with b vitamins. It's been several years of trying to get relief for my hands, legs and feet. I've tried leeches, a back stretching machine, acupuncture with electrical wires, and deep tissue massage. I am still doing acupuncture once a week and getting the massage once a week (he is amazing). The neuropathy also affects my gut so I have difficulty eating at times. I started taking cbd a few months ago, I'm not sure if anything is working but I'm not giving up. I don't have pain, but I am off balance and find it hard to walk. Good luck, maybe you'll find something new that works for you. JF

Good morning, Judith (@judithfraser000)
Thank you for your message. I have been taking alpha lipoic tablets, 600 mg, 2 x daily, along with a variety of B vitamins. So far my neuropathy is affecting only my feet, giving me my unreliable balance (some days worse than others). I don't have any pain, which sometimes puzzles my doctors. To a certain degree I attribute my unreliable walking to my severely flat feet (I've been wearing orthotics since the '80s), a prosthetic right knee, and a left knee that's got lots of arthritis (which my orthopedic doc says is not yet operable). So, neuropathy, compounded by other aches and pains.
Here's wishing you and me both some solutions in the coming months and years!
Cheers!
Ray (@ray666)

@ray666 - Hi Ray - One thing that I've realized in the past 7 years is that PN absolutely impacts us in different ways. As we've posted before, we do share similar symptoms but not exact. And that could likely be some clue. As I read various comments under different topics, I say to myself....wow, I had that at one time and now I don't (pain in toes), yes I have that balance issue as well and in my opinion, getting worse each year. Cause? Opinions vary from genetic to toxins. I have an odd symptom that left 5 neurologists scratching their head. It is what I call the blank look. This heading is right, endless journey which many of us share. Meanwhile, I focus on what I can do to slow down the progression. Are my efforts working? I think so. IF I bump into a cause, great. Even if I can get the cause, what do you do with that information. Because mine is axonal related, Mayo told me no cure. But as we are impacted by this, we sure would like to know the cause, wouldn't we. Idiopathic is not an answer, it's only a label. Those who have a cause are very fortunate. Meanwhile be well all and keep moving.
Ed

Good morning, @asergio714
Thank you for yesterday's message. From what you say, it sounds like you and I have almost identical problems. My neuropathy chiefly affects my feet, giving me balance problems. I too have scoliosis, along with some degenerative cervical and thoracic discs. Years ago I was told that I was pre-diabetic but not to worry. Lab tests since show me still pre-diabetic. Is that involved in my neuropathy? I wonder.
Ray (@ray666)

Good morning, @rob39
Thank you again for yesterday's message. I'm curious: when you say your PN was advancing rapidly, how rapidly was that? I had gone for years (maybe as much as ten years) with only minor balance difficulties. It has only been in the past one or two years that I've had to make some lifestyle changes, and, as I explained the other day to my neurologist, even now I find myself unable to say if my PN has gotten (or is getting) worse; a more accurate report is to say that it appears to have plateaued at a more troublesome level, with an occasional "bad" day. Will my PN eventually slip from that plateau and descend rapidly? That's my most pressing question.
Ray (@ray666)

Good morning, Ed (@njed)

I have to chuckle when I read how you've left 5 neurologists scratching their heads. I feel I've done much the same thing too. And I too am determined to do all I can to slow down the progression. I'm not happy with how things are now, but if I can manage to keep things "how they are now," I'll call that success. My at-home PT routine appears to be helping (helping = maintaining the status quo), so I'll certainly continue with that. I too would love to know the cause, even if knowing the cause didn't mean I and my doctors were now on the threshold of a cure. I've long since stopped dreaming of a cure.
I recall the afternoon one of my neurologists told me the best label he could attach to my malady was "idiopathic." Although I knew what the word meant, when I got home (because I love the etymology) I looked in my dictionary, and learned that "idio," from the Greek, means "peculiar," and "pathic," also from the Greek, means "suffering." I had to laugh. I thought I might be able to make use of that the next time I'm on a long supermarket checkout line: simply announce, "I should caution you all, I'm the victim of a peculiar suffering. You may want to let me get to the head of the line."

Enjoy the weekend, Ed.
Cheers!
Ray (@ray666)

Good morning, Debbie (@dbeshears1)
Thank you for your message! And thank you for reminding me of Gabapentin. I've heard of it, but know nothing about it. Nor has my neurologist mentioned it. He and I talk openly about my PN, so I wouldn't be shy about asking about Gabapentin.
I've not done any positive mind exercises as a deliberate practice, but I see myself as a naturally positive person anyway. That's why this neuropathy has put me somewhat off-balance (bad pun!). As a naturally positive person who, when challenged, immediately thinks: What can I do? my neuropathy has got me puzzled, having to learn as much as I can about my ailment before I can reasonably expect to answer the question: What can I do?
I do my own PT here at home. I've attended many PT workshops over the years and my home is now filled with PT handouts and all sorts of PT "props." I find it easier to do PT these days here at home. For several months now I have been following an online PT program, Better Balance for Life. I attribute what improvement I've made to that program.
Thank you again for your message. Let's both stay positive!
Cheers!
Ray (@ray666)