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

Rob39.. I have PN as you described, it was advancing rapidly, my Neurologist reffered me for a full spinal MRI. Apart from severe degineration, pinched nerves, stenosis it also showed a syrinx from T4 to T10 this answered a lot of my upper body pain questions and is possibly the reason for my leg weakness .

I have nueropathatyy in my feet. With balance problems. I have scoliosis and degenerative discs with some stenosis. I have balance problems. Dr is saying even though it started long before I had abnormal A1c that it is due to type 2 DM. Not sure I agree

Hello Ray, yes, there is something I'm just now trying, less than one week into a new protocol I'm trying after so many other things I've tried, including the Sanexas treatment, multiple vitamin, mineral supplements, PT, etc. Check The Protocol 525, find the ingredients and study those carefully. You'll see there is a particular kind of ALA, which is more bioavailable. Everything is taken in much higher amounts, therapeutic doses, which seem to make a difference. Anothiter requirement of the program is to drink at least 80 oz of water daily, a seemingly impossible feat, but it seems to work. Symptoms have improved greatly: better gait, more feeling in feet and less burning. The protocol eliminates vit B6, which I had always read could, in high doses, cause neuropathy. My research led me to a brand of B complex without 6. It is a strict regimen but can be done with discipline; the end goal is worth it. See ingredients on site. It is working for me, but of course, everyone's case is different.

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, @rob39, @asergio714, @seanmacbeth, and @dbeshears1

Will you forgive me this one time for replaying to you all in one reply? I was surprised –– and delighted –– to wake up this morning and find so many responses to yesterday's post. Your messages are filled with wonderful and intriguing suggestions; it will take me a little while to go over each of your messages with the care it deserves. I thought what I might do this morning is tell you a bit more about my history with PN.

When I'm asked, "How long ago did your PN begin?" I find myself scratching my head. Was it as long ago as ten years when I first noticed very occasionally (10-15 minutes) periods of wobbliness, so "occasional" that I never even mentioned them to my PCP? It's possible. But, as the years went by, my wobbly moments became less occasional and more worrisome until I finally confessed to my PCP that I was concerned about my increasingly unreliable balance. If I remember correctly, my PCP sent me to my first go-around with guided PT. I stuck with the PT on and off for a couple of years, wondering if PT was helping (I was sure, however, my co-pays were eroding my fixed-income savings!). Finally, I asked to see a neurologist. That neurologist had me get both cervical and thoracic MRIs; one, or the other, showed a degree of spinal infringement, but a second consult with a neurosurgeon provided a diagnosis of, Yes, there's some infringement, but nothing warranting surgery. At that point, frustrated, I asked if I might see a different kind of neurologist trained to consider a patient's whole body.* That led to my current neurologist, a doctor with whom I'm happy to be working.

*I mention "whole body" because I found I was having difficulty getting some of my other doctors to pay as much attention as I thought should be paid to (1) a lifetime of long-distance running, (2) a prosthetic right knee; (3) a left knee that's got lots of arthritis, and (4) a pair of severely flat feet, giving rise to all the usual woes of ankles, knees, hips, and back. I was sure that my lifestyle had had some influence on my late-life balance troubles –– along with the PN.

I'd better stop here. Other than to say that I have no pain, no dizziness, only this increasingly wobbly gait, what I often describe as feeling like trying to walk the deck of a ship in a lightly rolling sea: no pain, no dizziness, just a world shifting underfoot.

Again, thank you for all your wonderful messages!

Cheers!
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

@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, @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, @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, @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)