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

Have any of us ever progressed from an initial diagnosis of idiopathic neuropathy to anything more specific? I ask because the day my neurologist told me I had idiopathic neuropathy, he gave me the impression that "idiopathic," or "unknown," was a placeholder diagnosis until further testing revealed more. It's been a half year since I was given my diagnosis (idiopathic), and I'm always wondering if, at some future follow-up appointment, my doctor will be able to give me a more specific diagnosis. ––Ray (@ray666)

I have idiopathic neurapathy from a fall that broke my c2 and t2 spinal cord.
Would an mri help me find out more about my neurapathy?
Randy 54

Hi, Randy

Honest answer, as someone who's not a doctor? I don't know. Although, if I may be allowed a guess, yes. Every neurologist I've seen since I began my search for answers has started his or her evaluation of my neuropathy by having me get an MRI. So far, none of the doctors have said yes, Ray, for certain your cervical situation has a direct connection to your neuropathy. That's why the one neurologist, who is primarily a neurosurgeon, has cautioned me about surgery, saying if he were to operate, the outcome might find my neuropathy unchanged. I'll be meeting with this neurosurgeon at the end of the month. For this appointment, I got a fresh MRI only last Tuesday. So, we'll see. To answer your question, Randy –– again, as someone who's not a doctor –– an MRI is probably a good idea; also, it may be unavoidable.

Good luck!
Ray (@ray666)

Hello, all! I have two questions related to my own idiopathic polyneuropathy.

One question has to do with leg weakness. My legs feel reasonably strong (for a 78-year-old guy who's unable to get much exercise because of his PN), but most days grow weaker as the day goes along, sometimes feeling downright "rubbery" by evening. I've no tingling, no pain, just this "rubbery" feeling, like my legs can't be trusted.

My other question has to do with shoes. More specifically, with orthotics. Because of severely flat feet, I have been wearing orthotics since the 1980s. I still love going around barefoot indoors. More and more I've noticed that when I'm going around barefoot, especially on hardwood floors (I do wear non-slip socks), my feet and ankles (sometimes my knees, too) begin to ache. I find myself walking "funny." Am I making a terrible mistake by not wearing my orthotics 24/7, even if it means slipping them into a pair of slippers? Has anyone had a similar experience?

Merry Friday!
Ray (@ray666)

Hi Ray,
I would get that rubbery feeling on my right side when I was overdoing it but that is tied to my cerebral palsy/mild spasticity and not neuropathy so not sure that helps. As far as walking around barefoot it sounds like you already know the answer - if your body is complaining, you should probably do something to alleviate the issue. I can most days shower barefoot now but otherwise I always have shoes/slippers/slides on. I do have shower slides for when my foot does complain about the shower.

Hi, Aaron,

I suspected I may be doing my joints a disservice when I walk around barefoot, especially for hours on end, since those joints' proper alignment is now so dependent on my wearing my orthotics. In the coming days, I'll try to do a better job of giving my joints what they need. Thank you for your reply!

Ray (@ray666)

I was told it was due to my allergies, go figure. I hate this disease and I’m tired of being held back from doing what I love. Walking was something I always enjoyed and now I dread it. Please help me with any suggestions. Btw, I already have the very expensive sneakers and I hate them!

I just found out that I have a thyroid condition, and I wonder if that has anything to do with neuropathy. The doctors say thyroid TSH goes whacky at about age 60 and climbs as we get older. I have all sorts of problems, but peripheral neuropathy keeps me awake at night. I have feet and leg swelling due to poor circulation, and I'm heavier than I was. But the neuropathy came on last year, making my feet feel like it has 2 skins, and the feeling is weird. Now it's the legs and arms, burning pain. Nothing seems to help; I am age 76.

I also have severe arthritis bodywide, and my spine has stenosis and slight scoliosis, which has caused damage to the vertebra. That and hip/knee pain. It's not fun, and might contribute to neuropathy.

Your post caught my eye b/c of MRI tests. The Neuro wants to see if I have a pituitary tumor causing this mess. I am supposed to get one, but I wouldn't want brain surgery if I do have a tumor. Waiting for more thyroid test results; they think that since it's "normal" for thyroid readings to be off as we get older, I would need to have a very high TSH and T4 before treatment.

Pain medicine does nothing. It could be my imagination, but lasix for fluid retention seems to help some.

I feel bad for anyone who has this. I'm afraid to tell people about it because if they don't have it, they'd think I was crazy.
GVK

@ray666 - Ray - your posting about the dizziness caught my attention. At times, I get this odd sensation (extremely hard to describe) almost as a circular motion. I guess dizziness is the only word. Meds? Low blood pres? I can't tie it to anything. Another thing that I mentioned to my primary doc...."really". Also, on your idiopathic dx, I was told that in 2018 confirmed by Mayo 2020 and hasn't changed. I too thought it was a temporary label but unless something comes up as a cause, I'm afraid the idiopathic dx will remain. One of the heartwarming neurologists I saw in perhaps 2019 said to me....you will die with this but not from it. Talk about a mixed bag of news!! That doc I scratched off the list which is what made me then turn to Mayo in MN.

Julbpat, the best method to keep your blood vessel valves working is to make the work. When you exercise (walk, run, exercise, etc) the act of expanding your muscles pushing against your blood vessels helps to keep them in shape. And yes you are correct fluid pooling is the result of not working out. The stockings can be professionally fitted for some people who require that and they need to be high enough so as not to cut off circulation below the knee. Make sure you buy a stocking that meets your leg size as a too small one will constrict too much and arm you. Good luck.