← Return to Diagnosed with moderate/severe poly neuropathy: sensory motor

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@mhuddy4

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.

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Replies to "Thank you for sharing. I am young & had a bad car accident damaging my cervical..."

Hello @mhuddy4, Welcome to Connect. I know it must be terribly difficult to deal with everything you are going through right now. You mentioned getting Rhabdomyolysis. There is a discussion on the topic that might provide some help from other members with similar symptoms.

-- Rhabdomyolysis - Long-Term Recovery & Chronic Pain: https://connect.mayoclinic.org/discussion/rhabdomyolysis-long-term-recovery-chronic-pain/

You also mentioned being off balance and limping and having hip/pelvis surgery which the doctor mentioned it was shorter now. @sueinmn mentioned gait training helped her in this post in another discussion here - https://connect.mayoclinic.org/comment/635851/. Another discussion related might also help -- Balance & Gait Problems: A Real Puzzler: https://connect.mayoclinic.org/discussion/balance-gait-problems-a-real-puzzler/

I know PT can be difficult when you are struggling. It sounds like PT may help. Have you discussed PT with your doctor or care team?

mhuddy4 - The braces are a prescription. I was in PT at the time. My physical therapist felt that the AFO's would be helpful, he contacted my primary for a prescription and I took it to the company that sells them, got fitted and my insurance did pay for the cost. The company I dealt with actually fits patients with prosthetics and orthotics. If you google walk-on flex ottobock, you will see what I am wearing. The back part does flex backwards to a degree. First week or two, wore them a few hours a day. Oh yea, felt a little weird. Each week added an hour. I now wear them from time I get up until I go to bed. I am not in the medical field. I am only providing info on what works for me with my type of neuropathy. You have a lot of issues for sure. But, if you go to or return to PT, I would start with my phys therapist, they will know what is best for you based on your individual issues.
Wish you the best! Ed