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Desperate: Is there any hope for neuropathy?

Neuropathy | Last Active: Oct 23 6:49pm | Replies (118)

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@cecelia19

I’m trying to get into a major medical center for help for my PN, hoping that there is something I can try besides amitriptyline and Gabapentin. I can’t live this way. I would love to go to Mayo - I’ve been there ten times for different family members but don’t know if they can offer anything else. Right now everything seems so hopeless. Has anyone else ever felt like this? Am I just setting myself up for disappointment thinking that I can get my life back? Getting through each day is like climbing a mountain. Are there any success stories? Something to give me hope? Please help me.

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Replies to "I’m trying to get into a major medical center for help for my PN, hoping that..."

@cecelia19 I am so sorry you are having such a hard time.
I think most of us who have PN have or are feeling like you do. It’s a tough situation for all of us. It seems there are so many causes, and no answers for any of them.

I have polyneuropathy caused by an autoimmune disease that damaged my arteries which in turn damaged my nerves. That happened 9 years ago. I tried Gabapentin, and Lyrica. They put me to sleep…

Undoubtedly, for me the best thing is ALA, (Alpha Lipoic Acid). It was recommended by my doctor, and if I forget to take it my feet and legs remind me!
It’s an over the counter supplement that you can buy just about anywhere. I get mine on Amazon. The brand I use is “Doctor’s Best”. It’s not cheap, but it works. Two capsules works for me.

You are not alone with your pain and frustration.

@cecelia19, Getting your life back when you have PN can be difficult and I don't think you are alone feeling desperate wanting to get your life back. I'm not sure if you have heard about Mayo Clinic's Pain Rehab Center. You might find it helpful to read through this discussion started by @rwinney on her experience with the Mayo Pain Rehab Program.
-- Mayo Pain Rehab Program: Signing off and my comeback afterwards
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
There is also a newer discussion started by another member that might be helpful.
-- Mayo Clinic Pain Rehab Center (PRC) - What’s Your Experience?
https://connect.mayoclinic.org/discussion/mayo-clinic-prc-whats-your-experience/

When I read posts like this, I have to mention Tegretol (carbamazepine) again. You can read my earlier posts about my 30+ year history with Tegretol. It takes away the burning pain. I’ve tried all the standard medications.

This summer, I asked my neurologists about trying some other seizure medications, since Tegretol seemed to cause rapid and continuing weight gain for me. I weaned off of Tegretol with an instant return of burning pain in my toes. We tried Lamotrigine first, then Trileptal. Neither worked. I endured a lot of neuropathy pain for this self-inflicted experiment! A few weeks ago I threw in the towel, and am now back on Tegretol. Blessed relief within a week! 1000 mg per day seems to be my therapeutic dose.

I am exactly where you are with this darn neuropathy-used to never stay at home-was always out with friends playing golf, pickleball, etc and now by the time I take all of the drugs for pain-I hardly can remember my name!! Am very interested in Loma Linda or Mayo-Rochester (their neurology dept is supposed to be the best).

Hi I'm sorry your going thru this too. it's a dam curse. I am 69 yr female just diagnosed with some kind neuropathy, not known, test after test, numb feet for year, why didn't I go Dr sooner. they felt heavy not really pins and needles numb, then got bad muscle or nerve pain dont
know. which top buttocks down back of thighs etc especially after inactivity or sleeping 2 to 3 hours. intolerable. All med Dr want to do is give u another pill that gives u 15 more GD side effects. I already have high blood pressure, chronic lung problems didn't ever smoke, high cholesterol, and prediabetes, advanced degenerative arthritis and disc disease back and a spondylolisthesis curvature of 22 percent lower spine. I been doing everything I can to not go on a stupid pill from big pharma. they don't want to cure anything is the US because then we. ant stay sick and make big pharma rich. and all the other side effects from their dam pills, ridiculous. I to trying to get relief from Mayo clinic in Rochester. couldn't get a appointment for three months. two left. end Nov. been trying to work to getting FDA approval on a prescription cream supposed to have good results in phase 11 trials but FDA DOES NOT WANT A CURE EITHER. CUZ THERE IS BED WITH BIG PHARMA. THIS CREAM BEEN CLAIMED TO REGROW AND REGENERATE YOUR NERVES BUT ONLY A SMALL STUDY IS GOING ON CUZ LIMITED PEOPLE allowed in. bullshit politics everywhere. I been trying Neuralace treatments in Waterloo ia at ivo Beckovic MD neurologist office. some slight relief but don't know if it's long lasting in the numbers of feet? cost not covered by insurance or Medicare as always is the case so we are left with just a dam pill with more side effects. that's not right.edicare needs to cover these other treatments proven in trials to help since no one Wants to find a cure but they don't cover it. it's 200 a treatment. then it's ongoing for rest of your life probably. will have no more money left when spent my life savings. trying oral supplements don't have much faith. helps some people but not others. I'm scared. if big cities would bring these treatments to small rural areas, WE ARE IMPORTANT TO AND DESERVE TO LIVE OUT OUR RETIREMENT NOT SADDLED WITH THIS SHIT AND NO EFFECTIVE LONG TERM TREATMENTS OR CURE. BIG PHARMA TURNED DOWN WINSANTOR TO FUND A CREAM THAT COULD HELPED US. NOW WILL BE 4 or 5 years before they get it approved. it was made with a drug Pirenzeprine used to help bladder incontinence. there is an expensive treatment called Neurogenx that is higher electrical than tens and The Rebuilder with longer lasting five year studies but closed to NW Iowa is Minneapolis. six week treatment, two times week for 30 minutes in office 90 percent success rate but it's supposed to be somewhat covered by Medicare probably maybe only the evaluation and X-rays. it's 600 dollars for one treatment a week and 1200 for two treatments a week for 6 weeks and the 3,6 Nd 9 month followup with Dr. don't know if there is maintenance scheduled. only for those lucky people in big cities. I can't afford a motel room for six weeks and this stuff to pay too. so we all suffer. just some I fo it may help some of you lucky enough to be in big city where these are.