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Desperate: Is there any hope for neuropathy?
Hi everyone,
In 2019 I developed neuropathy in some toes in my right foot. Stabbing, sharp, creepy crawling sensations. My podiatrist prescribed a compounded topical and it worked. Last year my left foot went partially numb with shock like pain which was subdued by alpha lipoic acid, B complex, folate (I have a MTHFR mutation), turmeric and magnesium. In July I experienced partial numbness in my right foot after trenching out a landscape bed.
History: I am a 67 y/o female. I have Raynaud’s which mostly affects my fingers. I developed trigeminal neuralgia at age 30 after a dental procedure (I have been on Elavil 50mg since which has diminished this pain) and had neuropathic pain in an incision after ankle tendon surgery which resolved with physical therapy.
I have no motor dysfunction.
I read journal articles which are showing that acetyl-N-Carnitine is beneficial in helping to heal nerve tissue. I thought I would try this as the ALA worked so well and in addition to the numbness there was some breakthrough sharp pain. On the third day an hour after taking it, my ankles felt like they were on fire. It spread to my feet and legs from the knee down. Burning, pins and needle like pain. I’ve been popping Tylenol and Ibuprofen like crazy. Today I saw my PCP and she prescribed a Medrol dose pack (prednisone) which I’ll begin in the morning. She also prescribed Gabapentin (I took that short term before for the TGN), 300mg bid. A neurologist friend of my husband said that with my propensity towards parasthesias and Raynaud’s, this is likely symmetrical distal parasthesia from the carnitine and should go away within a week. It didn’t.
I am, quite frankly, desperate. I remember how difficult it was to get a handle on the TGN and so far the gaba doesn’t seem to be working. I am putting my hopes on the steroid but right now I feel profoundly depressed and can’t imagine living like this.
Is there someone who can give me a suggestion or words of encouragement because I am losing hope.
Thanks,
Cindy
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No it did not. It did make me drowsy at first but went away after a while.
Those are my issues as well. My toes, especially on my right foot are constantly twitching. Symptoms began 7 months after my last chemo treatment. It has now been 1 yr & 8 months. I was prescribed gabapentin & Duloxetine. I did some research and found some evidence that Alpha Lipoic Acid has helped some people. I have been taking for a couple months then stopped to see if it made a difference. My feet did feel more numb, so I am back on it.
Have you found anything that helps?
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.
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1 ReactionI was given instruction to take Ala, l glutamine, acytle carnation. I just have the numbness and balance issue.
One Dr gave gabapendon another gave duloxetine, neither did anything.
I'm 4 weeks from last chemo. Letting time pass to see if it gets better
Check 1 | P a g e L a s t u p d a t e d 7 / 9 / 2 0 2 0
Complementary and Alternative Treatments
The Foundation for Peripheral Neuropathy (FPN for alternative treatments
Complementary and Alternative Treatments
The Foundation for Peripheral Neuropathy (FPN for alternative treatments
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1 ReactionHello @bobm47, We removed your email address to protect your privacy since Connect is a public forum available to anyone on the Internet. Members can use the private message feature of Connect to share personal contact information. For more information on how to send private messages, see the Help Center - https://connect.mayoclinic.org/help-center/
@bobm47, I see that you wanted to share the Complementary and Alternative Treatments on the Foundation for Peripheral Neuropathy so I thought I would share the link for you since new members are not able to post links for a short period of time to prevent spammers from posting advertising. Here is the link to the treatments - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.
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3 ReactionsCould you send me a private message about these complementary and alternative treatments as I read you can’t publicly share email addresses. I tried sending you a private message but could not find the link for send private message.
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1 Reaction@cecelia19 I shared the link @bobm47 mentioned in the post directly above your reply here - https://connect.mayoclinic.org/comment/1145219/.