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

Hi, Betty
I've been wearing orthotics since the 1980s when I was still in my 30s. I'd always known I'd flat feet. In spite of that, I'd been a long-distance runner all of my life (marathons and longer). I can't say for certain that the orthotics helped me to keep running; I suspect they did, but I'm unable to prove it. All of my orthotics were doctor-prescribed, none were store-bought or ones like those from GoodFeet. Did that mean mine were any better? Here, too, I can't say, not with any certainty. Do you find that now you have to wear your orthotics just to have the balance you have? I'd always love going about barefoot, but now, with my neuropathy, I'm wondering if I'd be better off (kinder to my ankles, knees, and hips) if I were to wear my orthotics throughout the day. (Naturally, I'm no longer running –– no longer doing many of the things I used to enjoy doing!)
Ray (@ray666)

Hello!
This is for everyone who has been replying to my post from only a few days ago. I am amazed at the volume of replies! I am reading them all, but I may not get around to replying to each and every one individually, not right away anyway. I believe there is a function here in the Forum or in Mayo Connect that allows for private messages. If you'd like to get word to me directly and quickly, also to guarantee a quick reply, please see if you can send me a private message. (Someone here must know how that's done. I too will look into it.) One thing is certain, there sure are a lot of us trying to solve the mystery of neuropathies!
Cheers to you all!
Ray (@ray666)

Our experience with our two neuropathies is strikingly alike. I too have so far confined my PN to below the knee, nor do I have pain. I'm also doing every-other-day PT (some stationary cycling, too, to help with knee and leg strength). If there's one thing I'm not doing –– but have promised myself I will begin doing –– is a little outdoor walking. Now that the weather is improving, I've no longer any good excuses. I've got a cane in my Jeeop; my trekking poles too –– so, no excuses! LOL! My goal is to keep what I've got, make small improvements if possible, and hold the progression of my PN in check. If I can do that, I'll be happy. And grateful.
Ray (@ray666)

Hello, jemock (@jemock)
I suppose it is possible I am dealing with a different sort of neuropathy. I hadn't realized until I'd been diagnosed that "neuropathy" is more or less a catch-all expression for a whole host of neurological ailments. I'm learning that most clearly from the variety of messages here in the Forum. It appears that no matter what particular neuropathic ailment is ours, we're all in search of some measure of relief. I wish you the very best in your search! I hope you and I will have reason to exchange Forum posts again.
Cheers!
Ray (@ray666)

@ray666 - Lots of folks on this which gives you some idea about how many people are impacted. I saw a neurosurgeon based on MRI's thru various years. In 2017 surgeon said no surgery. I did a return trip in 2019, told me no again. So, in Aug 2019, I got nerve blocks done by a doctor who heads pain management in local hospital. Did feel better 3 days. About 3 weeks later, got second shot which is a pain killer and steroid. This was a pinpoint injection at L-5. Helped for 5 days and actually walked better. Was told this could happen short term but not a fix. I was to get a third injection, didn't return. For me, the procedure did not justify the end result.

Thanks for the reply. I will keep walking, exercising and playing pickleball. I found that when I am distracted with exercise or other activity, the Neuropathy is less noticeable. Good luck to you and stay positive.

Ray - Our symptoms are very similar which is alarming. I also have bilateral drop foot caused by ?? Neuro docs suggest it is caused by the numbness. I always have a cane nearby, in vehicles, my office and in homes. I also wear orthotics for the drop foot which increases balance, so I get a double benefit. My daughter recently got me the poles as well, but I've never had good coordination - OK, this pole goes here and what foot do I move with that pole. Got to read up on them so I don't end up in the ER! You've heard the expression walk and chew gum...I say no more! Let's keep what we got, good luck. Ed

@njed – Here again, too, I had a similar experience. Many years ago –– years before the onset of my PN –– I got the first two of a three-shot pinpoint series to relieve the pain I was experiencing thanks to an inflamed piriformis. The results were barely so-so, so I never went back for the third shot. – @ray666

@njed– The more we talk, the more I think our diagnoses are mirror images of each other. I also had drop foot maybe 15 years ago (?), which has never gone completely away. When it was at its worst, I wore a special boot (4-6 weeks?). The residue is still with me. There's a slight dragginess to my right foot. I have orthotics in all my shoes, but I love going about (indoors) barefoot. When I do, however, I'm forever wondering if I'm putting a bad torque on my joints (ankles, knees, hips). Me too: a cane in my car (goes everywhere with –– just in case) and a pair of trekking poles. My partner and I had a cabin in the Rockies; she loved it, I did too; but when my PN came along, we gave up the cabin. There was no way I could manage the rough ground; just the 40-yd. trail from the cabin to the outhouse would have kept me up nights. LOL –@ray666

From Johns Hopkins Medicine - "Platelet-rich plasma (PRP) injections are gaining popularity for a variety of conditions, from sports injuries to hair loss. The treatment uses a patient's own blood cells to accelerate healing in a specific area." The healthcare professional takes a small blood sample and puts it in a centrifuge and once separated, the plasma is injected into the affected area. As with anything, do your research on trusted websites, discuss with your doctor and consider the benefits vs the risks. It worked for me. Insurance didn't cover and it was about $3k for three sessions (spaced out by a month each time) for me. I live in Colorado.