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

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

What is it?

I had ablation for "insufficient" veins & wish I had gotten a second opinion. I had NO visible vericose veins, but I had redness in my feet that I believed could be blood pooling. One year later, my feet are still red. Prior to the ablation, I had pain but NO numbness. I am now numb all the time. The procedure hit some nerves & made my neuropathy MUCH worse. Be sure to make it clear to the vascular doctor that you have neuropathy. Ask them for a copy of the multi-page, fine print "release" forms, PRIOR to getting the procedure. Proceed with caution. I am paying dearly for my mistake.

@ray666 - On drop foot, mine never left. Without orthotics, I walk like my 2-year-old grandson, knees lift high and foot drops and I even walk like he does...holding furniture. Unable to walk normal because toes will get caught and down, I go. Have not fell forward since Dec 2019 so these things help me with improved walking and balance by 60 - 70% and no foot drop. I live at the beach and have lots of walking opportunities all flat and level. I take many short walks, my wife with me. I do not know of anyone where I live that has PN so this is indeed rare, and our year-round population is low. For me, that is the frustrating part because unless you have peripheral neuropathy, others don't know what this is like. My best explanation is ....ever have your foot fall asleep? Mine doesn't go away. Glad for Mayo Connect, we can share our experiences with many others and having knowledge about this disease without of a cure helps all along the way.

Ed @njed – I should be grateful, then, that my drop foot went away, even if I still have a tinge. Frankly, I'd pay it little mind if it weren't a number of doctors who've asked me to get up and walk about, so they could watch how I walk, who've said to me, "I see you've got a problem with your right foot. Have you ever had drop foot?" I too am a "furniture walker." That's why I'm inclined to turn down invitations to social events in other peoples' homes, especially homes I've never been to. Nights at home, when I have to get up from bed and go to the toilet, I know the path, not by foot-touch but by hand-touch: first the bureau top, then the bedroom doorpost, then the hallway wall, then the bathroom doorpost, finally the bathroom light switch. Your foot falling asleep but staying asleep analogy is painfully accurate! I also have a devil of a time getting friends to truly understand what my neuropathy is like –– to be able to "feel" it, if only in their imagination. Often I use the shipboard analogy to get across what walking feels like to me: like walking a ship's deck in a lightly rolling sea. You say you live near the beach. May I ask where? If I'd not mentioned it before, I'm a longtime New Yorker, with many memories of New Jersey, especially of Northern New Jersey. My first assignment in the service was Sandy Hook, and my first job after discharge was with the Bergen County Record in Hackensack. –Ray (@ray666)

Ed @njed – I should be grateful, then, that my drop foot went away, even if I still have a tinge. Frankly, I'd pay it little mind if it weren't a number of doctors who've asked me to get up and walk about, so they could watch how I walk, who've said to me, "I see you've got a problem with your right foot. Have you ever had drop foot?" I too am a "furniture walker." That's why I'm inclined to turn down invitations to social events in other peoples' homes, especially homes I've never been to. Nights at home, when I have to get up from bed and go to the toilet, I know the path, not by foot-touch but by hand-touch: first the bureau top, then the bedroom doorpost, then the hallway wall, then the bathroom doorpost, finally the bathroom light switch. Your foot falling asleep but staying asleep analogy is painfully accurate! I also have a devil of a time getting friends to truly understand what my neuropathy is like –– to be able to "feel" it, if only in their imagination. Often I use the shipboard analogy to get across what walking feels like to me: like walking a ship's deck in a lightly rolling sea. You say you live near the beach. May I ask where? If I'd not mentioned it before, I'm a longtime New Yorker, with many memories of New Jersey, especially of Northern New Jersey. My first assignment in the service was Sandy Hook, and my first job after discharge was with the Bergen County Record in Hackensack. –Ray (@ray666)

In many ways, we have to learn how to adjust the way in which we live our lives to the ever-changing issues of PN. You develop a tooth ache, go to the dentist and it's fixed, pain gone. This is different. You go to the doctor and in many cases, you walk away with more questions than what you walked in with. I also am very comfortable around my known surroundings. For now, we deal with the symptoms and keep fingers crossed for our future and keep moving.

Hello, Rob (@rob39)
I see how you too have been dealing with pain. It seems many others here too have been trying to cope with varying degrees of pain. That may explain the various medications that have been mentioned. Since I have yet to experience pain –– only numbness, and even that my numbness is far from 100% (it took the EMG test to even convince me I had numbness) –– that may be why my neurologist has this far only I advise that I take alpha lipoic acid (R-lipoic acid) and keep up on all of my B vitamins. I too now carry a walking stick around with me (it, or a pair of trekking poles), but I don't rely on it full-time, only if I find myself on 'tricky' ground. Me too: some days –– or some hours of the day –– my legs feel really weak, but other days or hours they feel fine. Puzzling. Nor have I confirmed that my leg weakness is connected to my PN. I attribute some, or maybe all, of the weakness to getting older. I use my stationary bicycle as much as possible trying to recover some leg strength. (Interesting: you're in Australia. The online balance program I have been following for the past several months is sent from Perth.)

Ray (@ray666)

Ed @njed – I should be grateful, then, that my drop foot went away, even if I still have a tinge. Frankly, I'd pay it little mind if it weren't a number of doctors who've asked me to get up and walk about, so they could watch how I walk, who've said to me, "I see you've got a problem with your right foot. Have you ever had drop foot?" I too am a "furniture walker." That's why I'm inclined to turn down invitations to social events in other peoples' homes, especially homes I've never been to. Nights at home, when I have to get up from bed and go to the toilet, I know the path, not by foot-touch but by hand-touch: first the bureau top, then the bedroom doorpost, then the hallway wall, then the bathroom doorpost, finally the bathroom light switch. Your foot falling asleep but staying asleep analogy is painfully accurate! I also have a devil of a time getting friends to truly understand what my neuropathy is like –– to be able to "feel" it, if only in their imagination. Often I use the shipboard analogy to get across what walking feels like to me: like walking a ship's deck in a lightly rolling sea. You say you live near the beach. May I ask where? If I'd not mentioned it before, I'm a longtime New Yorker, with many memories of New Jersey, especially of Northern New Jersey. My first assignment in the service was Sandy Hook, and my first job after discharge was with the Bergen County Record in Hackensack. –Ray (@ray666)