Desperate: Is there any hope for neuropathy?

Posted by cecelia19 @cecelia19, Aug 19 10:48pm

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

Interested in more discussions like this? Go to the Neuropathy Support Group.

cecelia19 | @cecelia19 | Sep 22 6:08pm

In reply to @johnbishop "@cecelia19 I shared the link @bobm47 mentioned in the post directly above your reply here -..." + (show)

Thank you, John!
It lifts my spirits that there are so many alternative treatments out there I never had known about.

cecelia19 | @cecelia19 | Sep 22 6:20pm

In reply to @johnbishop "@bobm47, I see that you wanted to share the Complementary and Alternative Treatments on the Foundation..." + (show)

Thanks so much. This gives me hope to see all these possibilities.

nct12 | @nct12 | Sep 23 9:57am

In reply to @findtheanswersdn "Hi I'm sorry your going thru this too. it's a dam curse. I am 69 yr..." + (show)

@findtheanswersdn

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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I agree with practically everything you are saying! Your last comment on treatments at Mayo in Rochester I have checked on also. Right now I am working with an upper cervical doctor near me, and hoping that he can help. I do believe if you check further with Mayo in Rochester, and I they do offer options are for longer visits. Check out their top neurologist. That is my next step. Yes what I’m doing now doesn’t work! I wish you the very best and try and stay positive which I know is tough!o

anoyymous123 | @anoyymous123 | Sep 24 4:47pm

In reply to @nct12 "I agree with practically everything you are saying! Your last comment on treatments at Mayo in..." + (show)

FDA just approved new drug by Argenex company for CIDP first NEW DRUG

anoyymous123 | @anoyymous123 | Sep 24 4:55pm

In reply to @nct12 "I agree with practically everything you are saying! Your last comment on treatments at Mayo in..." + (show)

Name of drug Vyvgart Hytrulo appvd by fda for cidp

Chris Trout, Volunteer Mentor | @artscaping | Sep 25 12:28pm

In reply to @johnbishop "@cecelia19 I shared the link @bobm47 mentioned in the post directly above your reply here -..." + (show)

Thanks @johnbishop for this information.
ChrisT2024

jimbral | @jimbral | Sep 25 12:51pm

I have small nerve fiber neuropathy. Worked up at Cleveland Clinic. Just starting regimen of 1 mg B12 supplement and 1 mg folic acid supplement every morning by mouth plus a monthly injection of B12. Could be months before I see results, if any. They gave me RX medicine for my multiple daily orthostatic hypotension episodes which have essentially gone away so I have great hope for this neuropathy treatment plan. My blood test consistenting was coming in at the very low end of the labs reference range. Anyone ever hear of this?

bettyg81pain | @bettyg81pain | Sep 25 9:03pm

In reply to @nct12 "I agree with practically everything you are saying! Your last comment on treatments at Mayo in..." + (show)

Who is their top neurologist? (Mayo?) I am wondering which to set up an appointment with-Mayo or Loma Linda? They appear to have helped patients also-I'm at the point that I have to do something!! Have many miles of life ahead!!

cecelia19 | @cecelia19 | Sep 27 1:58am

I have nothing but positive things to say about Mayo in Rochester and our family has been there eleven times - ten since 2014. I know they are number one in neurology. Basically, you stay there until they do all the tests and arrive at a diagnosis and treatment plan. All done in a compressed time frame. It’s great. Travel is harder for me now but I am keeping that option open for myself if I don’t find a solution closer to home. Wishing you all the best!

NJ Ed | @njed | Sep 29 6:33am

@cecelia19 - As I've posted several times, I was fortunate enough to be accepted at Mayo, Rochester. People from all over the world go there and I too found the place to be a well-oiled machine. They did more tests than any other place and all my tests were done over a 3-day period, several per day. I was unable to select a certain neurologist, they seem to choose the doctor based on prior information I provided relating to my case. I went there for answers. With my PN, they gave me suggestions to slow progression - mainly exercise thru physical therapy....but of course, no cure. As folks live longer, more people will develop PN and as far as hope goes, I think first we will see ways to stabilize PN, reduce pain but a way in which to regenerate damaged nerves, that to me is a huge leap from where we stand today. Best to all and keep moving. Ed

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