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

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julbpat | @julbpat | Sep 17 8:12am

In reply to @cecelia19 "I’m trying to get into a major medical center for help for my PN, hoping that..." + (show)

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.

cecelia19 | @cecelia19 | Sep 17 11:30am

In reply to @julbpat "When I read posts like this, I have to mention Tegretol (carbamazepine) again. You can read..." + (show)

Thank you so much for this help. The burning is the worst.

cecelia19 | @cecelia19 | Sep 17 11:31am

In reply to @cecelia19 "Thank you so much for this help. The burning is the worst." + (show)

Do you take it spaced throughout the day or all at once?

cecelia19 | @cecelia19 | Sep 17 12:21pm

In reply to @SusanEllen66 "@cecelia19 I am so sorry you are having such a hard time. I think most of..." + (show)

Thank you so much. The doctor suspects that an autoimmune disease is behind my neuropathy as well. Tests are pending. When you were on Gabapentin, how much did you take? And the Doctor’s Best - what strength do you take? There are several choices on Amazon - 150, 300, or 600?

bettyg81pain | @bettyg81pain | Sep 17 12:53pm

In reply to @cecelia19 "I’m trying to get into a major medical center for help for my PN, hoping that..." + (show)

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).

SusanEllen66 | @SusanEllen66 | Sep 17 9:26pm

In reply to @cecelia19 "Thank you so much. The doctor suspects that an autoimmune disease is behind my neuropathy as..." + (show)

@cecelia19 I take 600mg of ALA. One before breakfast, the other at night.
Gabapentin dose was very low, I don’t remember exactly what.
My body is very sensitive to meds. Even 2 Tylenol (regular) make me sleepy.

cecelia19 | @cecelia19 | Sep 17 9:45pm

In reply to @SusanEllen66 "@cecelia19 I take 600mg of ALA. One before breakfast, the other at night. Gabapentin dose was..." + (show)

Thank you so much for the details. I’ll try that brand. Right now I’ve only been taking 400mg total a day. What I’ve read about ALA that I like is that it actually repairs the nerves not just masks the pain.

cecelia19 | @cecelia19 | Sep 17 10:03pm

In reply to @bettyg81pain "I am exactly where you are with this darn neuropathy-used to never stay at home-was always..." + (show)

That was me - hiking, yard work, painting walls, enjoying life then life came to a grinding halt. Mayo-Rochester is ranked #1 for Mayo and I’ve been there 10x for family members - I could give tours. The beauty of Mayo is you go there, you see all the specialists, have all the tests in a compressed window of time and at the end, they have all consulted - a team approach - and come up with a diagnosis and a plan. It is the Hogwarts of medicine. We’ve always left feeling so much better and more hopeful than when we got there. They don’t know what caused mine and I feel that it is important to know why so they potentially could keep this from progressing. Yesterday I started taking 100 mg Gabapentin 4x/day. I find that the lower dose spaced out causes a lot less brain fog than a higher dose all at once. I have to be able to drive - and think! Keep me posted and let me know what is helping you along the way. Communicating with others is helping me feel less alone.

duquer | @duquer | Sep 18 7:30am

Have you heard about the new Sanexas therapy for neuropathy pain? ? I started the Sanexas treatment for neuropathy pain in January of last year. I have had really good results. I have written a story about my experience and would gladly share it with anyone. Please let me know.
https://connect.mayoclinic.org/comment/645606/

julbpat | @julbpat | Sep 18 7:46am

In reply to @cecelia19 "Do you take it spaced throughout the day or all at once?" + (show)

I take 400 mg in the morning, and 600 mg at night. Seizure medications, by design, have a long half-life. They hang around in your system longer so you maintain a therapeutic level throughout the day.