Diagnosed with moderate/severe poly neuropathy: sensory motor

Hi - well, you are not alone! I have axonal sensorimotor PN and numbness from shins to toes along with bilateral drop foot. Idiopathic. I'm 72 and got dx at Mayo early 2020, mine started in 2014 or so....very slow. Seems to level for a while, then gets slightly worse. Slight numbness in fingertips started in 2019. I have AFO's for foot drop and they also help about 70% with my very poor balance. We have 3 grown children and from the start I've tried to be open about my diagnosis and I've found that by me being up front on what I can and can't do has helped them as well...when does dad need a hand and when doesn't he. If I need help with something, they know I'll ask. For the most part, my wife and I walk to some degree every day and in winter, I walk inside. I cut my own grass over a two-day period...walking. I can't hide AFO's with shorts on so this has helped me to be open about my condition. I am going to look into your HOKA suggestion as there are times when I don't wear the AFO's. Thanks and be well.

I like your enthusiasm! I pretty much have your condition, though more severe. I may have to give HOKA shoes a try, I’ve read where a few here like them. It’s just hard changing from the shoes that are working so well for my feet, Skechers. The only drawback with Skechers is that I’m only getting 3 months out of a pair. I realize our gaits and issues are all different on how we wear out shoes, but do you mind me asking how much life you tend to get out of your HOKAs?

I can almost feel normal. Also, of recent; as I was having itching attacks at night which woke me up and I just could not resist itching to the point of bleeding, my dr. gave me a prescription on for lidocaine patches which are helping a lot. I only put one on if during the day I am getting that "feeling." Please report your experiences should you get the hokas. They're around $150. My left pinky is also a bit numb. When I wake up, often my hands are numb up to the elbow but on adjusting myself, this corrects to normal. doc thinks it has to do with a pinched nerve. I changed my docs this this year to the concierge model and I am so, so very happy with this. I carry around his number and I can call 24/7 7 days a week if need help. I have never done this and do not intend to unless it is a real emergency. I recommend this to others who can afford it at 5K a year. I am not a "fat cat" and it was a stretch to go this way but I figured...here I am almost 75 and as expected I am breaking after so many years on the planet and I will give it a try. He is more than a doc...he is an advocate, a health warrior for me and it is just very, very reassuring. Kaiser docs had me on the clock every time and the neurologist kept saying, " take more gabapentin" and that was IT. I keep very active, walking, stretching, lifting a few weights and eating right. my weight is ok and by the way, if anyone has weight issues....that would be #1 to address in my opinion. Best to all.

Sadly I think any type of shoe with foam based inserts is only good for about 3 to 5 months. I also was thinking about tryin Hoka's as I've been updating my Sketchers footwear a couple of times a year.

Hello, I have CIDP and also have similar problems with my feet and legs. One thing that does help me is physical therapy and exercise. I find if I don't exercise the pain and numbness can be unbearable.
hope things continue to get better.
Kim

You're right. Although they are very expensive, I get a new pair every 5 months or so. Without them, I am limited to what and where I can go.
All the best.

njed, what are AFOs? I found new balance shoes work well for me. I have a very wide toebox which I need for my cold toes. I use an insert with arch support also. Good for you for mowing your own lawn. My balance is too unsteady to do that so it doesn’t look as good as it used to but in this oh so dry southern Colorado nobody else’s looks real good either!. Wishing you a good time with that lawnmower! bcool123

bcool123 - the AFO stands for ankle foot orthosis. I have drop foot which developed from the neuropathy. My feet "slap" on the floor and I walk by lifting knees higher than normal or I trip, front of foot gets caught. What I have is a brace that fits into the shoe and a bar wraps around back of leg to a strap with velcro that goes around the calf. This keeps my leg and foot at a 90 degree angle so I don't trip and it provides me with a more natural heel to toe walk. Having sensorimotor PN these really help with my balance. I will never do a TV commercial as a grass cutter, takes me a few days at 20 - 30 minute sessions but I manage and I take my time. For now, I'm resisting in buying a riding mower. These are not for everyone but work for me.

Thank you for sharing. I am young & had a bad car accident damaging my cervical spine w/infusion 12 years ago. It also damaged my spine causing the balance, neuropathy in my R foot, broke R hip/pelvis… 2 years ago I fell on my R almost my ankle now I have a metal rod from my knee to my ankle to screw the bone. This is all R side…. A few months later I get Rabdo causing total neuropathy in my L foot & couldn’t walk, touch, swollen, red…. That eventually led to MSRA in my bloodstream from the acute dialysis. Went to my heart ( surgery went well) then a few months later it went to my lower lumbar ( MSRA) obviously this has been a train wreck but my L fot has drastically improved ( almost 2 years) but still very numb, hard to walk on, balance awful, tennis shoes only, drop foot, can’t hold sandals on at all… still taking antibiotics for the MSRA yes almost 2 years later ( new MRI coming up to check progress) ok…. So I say all this to ask…. Those braces in your shoes/calf I just can’t imagine wearing 1 on each leg but obviously that would be more ideal but with your experience using one on my worst foot now ( my R doesn’t affect me like it did but still the weakest & hip & hardware in my knee) would just 1 work enough to give me some relief? Do you experience any back pain before yours? I obviously have it because of the MSRA eating away at the tissue but also from my MVA. I was already off balance & limping ( very little) but I believed my back pain then was just being uneven with my hip/pelvis surgery ( doctor said it was shorter now) so I have 2-3 contributed factors on my back pain. Did the brace relieve any of yours if you had it? Like I said I’m young & this is going to be a long road ahead I’m sure. Any suggestions would be appreciated. Also did you get those through your PT? Or DR? I have yet to do PT for this new setback because I just wasn’t mentally able. It destroyed me. Im just now getting to be able to try & be independent ( thank his I have a 17 yr old daughter at home) so I know I have to get in gear to take care of ALL the things physically crippliling my body ability to be real mobile & Any little thing to get me 20 more min on my feet is my goal. Sorry for the over information. 1st time posting & im sure some of this could have went to the spine group maybe.

I find that changing shoes is having to readjust the balance formula my brain has learned. Also, my muscles - my legs will be sore after wearing a different type of shoe. So I guess when choosing our battles, it seems well worth it to stick with what seems to be working while supplies are available!