Anyone lost the ability to walk due to peripheral neuropathy?

@rjack6618
Are you not able to walk due to pain or weakness/numbness?

What is the cause of your neuropathy? Do you have large fiber neuropathy making it hard to control your legs? Depending on the cause, there may be some treatments but not sure of the large nerve fibers are able to heal. Are you getting physical and occupational therapy? Do you have family/friends to help with daily tasks?

I have idiopathic small fiber peripheral neuropathy since 2002 I can’t feel my feet have no balance and walking is unbearable.They have me on gabapentin which does hardly anything for pain numbness burning sleeping is difficult I have tried everything spent thousands and nothing helps. Just tried umbilical stem cell injections at cost of 16,000 $ to no avail doctor lied and I believed hoping it would help.i am exhausted with this disease and have no where to turn

@771
Sorry to hear you are also suffering. Did you ever get MRIs of your cervical and lumbar spine to check for compressed nerves? Did you have a neurologist do an EMG/nerve conduction study of upper and lower limbs?

There really isn’t a cure for small fiber neuropathy and the best they can do is find the cause and treat that (like diabetes, vitamin deficiencies/toxicities, stopping alcohol/smoking since they are toxins to the body, reviewing medications to see if they are the cause, etc.). Chemotherapy can also cause neuropathy. Did you have extensive bloodwork to see if there was anything flagged as abnormal? I am assuming you did if your neuropathy was classified as idiopathic.

Have you tried taking alpha Lipoic acid, acetylene l carnitine and magnesium supplements? They do help reduce some of my symptoms. Seeing a dietitian/nutritionist can help review diet/supplements to suggest changes that may help and physical therapy to help improve blood circulation and modify exercise due to your pain.

Yes I have had all the tests the neurosurgeon ordered. According to him he found nothing that he could fix with surgery. Basically he said I might recover my ability to walk with extensive physical therapy. Funny thing is I’m numb but I’m not in pain. The other thing is I also have arthritis pretty bad in both knees and when I get them injected every three months I can almost walk without my walker. Or at least get around so much so easier and with no fear of my legs collapsing and falling. My knee doctor will not replace my knees until I have my neuropathy gone. I’m so frustrated because I believe I could regain my strength in my lower legs if I had new knees. The injections only make me stronger for about 3 weeks. The doctor will only due the injections every 3 months and I’m not sure but I think that is the insurance policy. Anyway my life is mostly just sitting watching tv and waiting for those 3 months to pass. Thanks for responding and best wishes to you.

Yes I have had all the tests the neurosurgeon ordered. According to him he found nothing that he could fix with surgery. Basically he said I might recover my ability to walk with extensive physical therapy. Funny thing is I’m numb but I’m not in pain. The other thing is I also have arthritis pretty bad in both knees and when I get them injected every three months I can almost walk without my walker. Or at least get around so much so easier and with no fear of my legs collapsing and falling. My knee doctor will not replace my knees until I have my neuropathy gone. I’m so frustrated because I believe I could regain my strength in my lower legs if I had new knees. The injections only make me stronger for about 3 weeks. The doctor will only due the injections every 3 months and I’m not sure but I think that is the insurance policy. Anyway my life is mostly just sitting watching tv and waiting for those 3 months to pass. Thanks for responding and best wishes to you.

@rjack6618
What do the knee injections do if you are not in pain? Do they cause the numbness to go away? If so, that means you have inflammation and irritation in the joint from too much rubbing and movement. You need stability in your knee which sounds like knee replacement may help..

Have you only tried cortisone shots or have you tried biologics?

@rjack6618
I can relate with the limited quality of life.

You need a new hip/knee orthopedic specialist to evaluate your knees. There is no such thing as neuropathy “going away” before an orthopedic surgeon does surgery. I have neuropathy and have had 3 spine surgeries and carpal tunnel surgery. I am in my mid 50s. Do you think you are being dismissed due to age?

Yes I have had all the tests the neurosurgeon ordered. According to him he found nothing that he could fix with surgery. Basically he said I might recover my ability to walk with extensive physical therapy. Funny thing is I’m numb but I’m not in pain. The other thing is I also have arthritis pretty bad in both knees and when I get them injected every three months I can almost walk without my walker. Or at least get around so much so easier and with no fear of my legs collapsing and falling. My knee doctor will not replace my knees until I have my neuropathy gone. I’m so frustrated because I believe I could regain my strength in my lower legs if I had new knees. The injections only make me stronger for about 3 weeks. The doctor will only due the injections every 3 months and I’m not sure but I think that is the insurance policy. Anyway my life is mostly just sitting watching tv and waiting for those 3 months to pass. Thanks for responding and best wishes to you.

"I’m so frustrated because I believe I could regain my strength in my lower legs if I had new knees."

Oh boy, @rjack6618, do I relate! My knees, in my estimation, are what stand between me and recovering a modicum of leg strength. I saw my orthopedist a month ago––I was there for his nurse to give me yet another injection––and meeting the doc in the hall asked in passing if, at 80 and with large-fiber neuropathy, I'd "aged out" of knee transplant eligibility. I know I caught him off-guard. He stumbled an answer: "Oh, no, no. We could consider a replacement." Something tells me, if were seriously to discuss the possibility of a replacement and I were to honestly tell him about my balance issues, he might revise his thinking. In the meantime, I'll continue with PT, apologizing to my therapist for not showing more improvement. Oh, these dang knees. 🙂 –Ray (@ray666)

Thank you Ray for understanding my frustration. I don’t claim to know more than the doctor but all I know is how strong I feel when I get the injections. My lower legs feel stronger too. I just think it would be worth a try to replace my knees. It can’t make things worse in my opinion.