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

I have idiopathic small fiber neuropathy. I tried PRP a couple of years ago and no blue/purple toes or tingling or electric sensations since then. Symptoms are just starting to return, but they didn’t say it would be a “forever“ fix. It’s spendy, but they think it’s great that I got a couple of years of relief. I also might have Raynaud’s and Hashimoto. I’ve been pre-diabetic for 10+ years.

@jwr - You asked me what I feel is helpful. The short answer is I go to PT and I exercise when I can....even walking. Back in 2015, when I first entered this journey, a neurologist told me to keep moving. Back then, I didn't realize the importance of what he said but that has been the best advise so far. I go to PT for balance exercises 1 - 2 days a week. According to my neuro doc, my PN seems to be holding about 5 -6 inches below knees for past 12 months. I have both small and large fiber neuropathy. I do not experience pain but all numbness and poor balance. My goal is to slow down the progression and retain balance. I know I'm not going to get rid of this but if I can slow it down, for me that is helpful, and I'll do what is necessary to accomplish that. Ed

Try anti-embolism stockings to decrease swelling.

Conrad, you might find compression socks helpful for this. They come in different “strengths”. The 20-30mm are pretty snug. I don’t have swelling, but have heard others refer to them.

julbpat,
Thanks for the reply. I tried some socks from a local doctor's office. they were almost knee high. I couldn't handle it. I think I'll try some different ones that aren't that high on my legs. I watched a video of a doctor about valves in the veins in the legs. If they aren't working properly, fluid settles in the feet. I'm going to do more research on that.
Thanks'
Conrad

I have got really flat feet also and they started turning (right outward) left, who knows?? plus I have neuropathy really bad from knees down. Don't you think you inherited the flat feet? Me playing tennis for years in Tretorn's sure didn't help either!! My question is, who do you have make your orthotics? Ive paid for several expensive ones to be made and none of them have actually worked that well and I kept having them remade; but, have given up on the ones to date.

I also have cervical stenosis and myofascial pain when weather is bad. Stenosis can cause balance problems. My question is would operation on neck make things any better or are problems brain mediated. There is woman on here who had her neuropathy improve with neck surgery.

I’m not familiar with PRP. Please explain what it is?

What is it?

Hi, Lewin
A year ago I was referred to a neurosurgeon for an opinion on whether surgery might help my balance. After pouring over my cervical and thoracic MRIs, he thought no, surgery was not called for. He went so far as to say if I were to insist and he were to operate, I might find that my balance had not improved one iota. He suggested a one-year follow-up, which just happens to be later this month.
Ray (@ray666)