1. < Neuropathy

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.

stallen | @stallen | Sep 29 8:51pm
In reply to @njed "@cecelia19 - As I've posted several times, I was fortunate enough to be accepted at Mayo,..." + (show)
@njed

@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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Hi Ed…Hope you’re still doing well. Do you have any autonomic neuropathy? I presume you were tested when at Mayo?
Btw…you’ve got cruise coming up, right?
Steve

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NJ Ed | @njed | Sep 30 5:45am

@stallen Hi Steve - I was tested for autonomic at Mayo in Feb 2020 and the results were negative. On the cruise, we moved it from Nov to March 2025. I've never been a fan about cruising in hurricane season, had one nightmare already. My wife recently hit a few bumps in the road, pacemaker put in 7 days ago, she is doing good. Stay well. Ed

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modmarket1 | @modmarket1 | Oct 1 12:34pm

I had a disastrous experience with Gabapentin. It was effective initially, but the dose was consistently increased. It drastically affected/altered my mood(s) and caused anxiety, agitation, even to the point of anger and outburst. Titrating down was worse than any thing else I've ever experienced, including several illicit drugs (hey, I was young). Alternatively, B1, specifically Benfotiamine, taken in conjunction with Alpha Lipoic Acid has helped tremendously. Magnesium, and Vit D also seem to contribute to lesser peripheral neuropathy, anecdotally speaking (others who suffer concur). Steroids WILL lower your immunity, and while offering short term, tempory help, are counter productive long term in my experience. I am not a medical professional. Please research for yourself and consult with your doctor.

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1 reply
cecelia19 | @cecelia19 | Oct 1 9:22pm
In reply to @modmarket1 "I had a disastrous experience with Gabapentin. It was effective initially, but the dose was consistently..." + (show)
@modmarket1

I had a disastrous experience with Gabapentin. It was effective initially, but the dose was consistently increased. It drastically affected/altered my mood(s) and caused anxiety, agitation, even to the point of anger and outburst. Titrating down was worse than any thing else I've ever experienced, including several illicit drugs (hey, I was young). Alternatively, B1, specifically Benfotiamine, taken in conjunction with Alpha Lipoic Acid has helped tremendously. Magnesium, and Vit D also seem to contribute to lesser peripheral neuropathy, anecdotally speaking (others who suffer concur). Steroids WILL lower your immunity, and while offering short term, tempory help, are counter productive long term in my experience. I am not a medical professional. Please research for yourself and consult with your doctor.

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So far that has been the only thing that has helped with my pain. I don’t know what to do. I’m hoping to get into a tertiary care clinic so I can explore other options.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 2 8:58pm
In reply to @cecelia19 "So far that has been the only thing that has helped with my pain. I don’t..." + (show)
@cecelia19

So far that has been the only thing that has helped with my pain. I don’t know what to do. I’m hoping to get into a tertiary care clinic so I can explore other options.

Jump to this post

Cecelia - Here is my long-time advice when you read "horror stories" about a drug or treatment that is helping you -
STOP. READING. THEM.
Just because your sister, your neighbor, or a stranger on Connect had a bad experience doesn't mean it will happen to you. Every person, every body, every situation is different.

Let me give you examples -
I have high cholesterol, but cannot take statins. My husband, my daughter and many friends all take them successfully. What I say is "I'm glad for you, but I need to find something else." My doc found "something else" and it works for me.
I take Symbicort for my asthma. It contains a steroid. I also have bronchiectasis, and people with it are advised not to use steroids. But it works for me, and it keeps me out of the hospital. So I say, "My doctor and I have decided it is best for me."

If gabapentin works for you (my husband has used it for years for neuropathy, and has only recently had to increase his dose) then use it and shut out the "noise" from those who cannot, will not, or don't want you to use it.

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2 replies
kforrest | @kforrest | Oct 3 11:29am

do your own research. a dr told me he uses google. I an also not quite one week in on 300 mg gabapentin. I was told my my insurance guy that people who go with higher dosage walk around like zombies. I always forget that it takes time to feel the medicines

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1 reply
bb0753 | @bb0753 | Oct 4 6:49am
In reply to @kforrest "do your own research. a dr told me he uses google. I an also not quite..." + (show)
@kforrest

do your own research. a dr told me he uses google. I an also not quite one week in on 300 mg gabapentin. I was told my my insurance guy that people who go with higher dosage walk around like zombies. I always forget that it takes time to feel the medicines

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My doctor said gabapentin is only to cover pain it does nothing to improve neuropathy.

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2 replies
kforrest | @kforrest | Oct 4 8:21am
In reply to @bb0753 "My doctor said gabapentin is only to cover pain it does nothing to improve neuropathy." + (show)
@bb0753

My doctor said gabapentin is only to cover pain it does nothing to improve neuropathy.

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Gabapentin
Common brands: Horizant, Gralise, Neuraptine
Anticonvulsant and Nerve pain medication
It can treat seizures and pain caused by shingles.

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kforrest | @kforrest | Oct 4 8:34am

than you for this account. I have osteoarthritis and diabetes2 cuts that won't heal on my foot and possibly diabetes neuropathy. there may be no cure other than weight loss. I am on ozempic for weight loss.

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