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.

cecelia19 | @cecelia19 | Oct 4 9:50pm
In reply to @sueinmn "Cecelia - Here is my long-time advice when you read "horror stories" about a drug or..." + (show)
@sueinmn

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.

Jump to this post

Thank you, Sue. I needed to hear this because I need to take this medication for now. Perfect examples you gave about the other medications and directs me to the right perspective on this. And it is a comfort to read that your husband has been on Gabapentin for years. I am grateful that you took the time to write these encouraging words.

REPLY
kforrest | @kforrest | Oct 5 8:29am

don't stress out, hoping you find a solution.

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1 reply
proteusx | @proteusx | Oct 5 12:39pm
In reply to @kforrest "I read differently" + (show)
@kforrest

I read differently

Jump to this post

Gabapentin has never demonstrated any convincing ability to modify peripheral neuropathy; almost nothing has. There are a couple drugs in the pipeline that promise to do this but time will tell. There is some evidence worthy of the name that the prescription drug Qutenza may not only ameliorate pain but also favorably modify the course of the disease through some nerve regeneration. This is the high potency prescription-only capsaicin patch that must be applied by a physician. It is used primarily for diabetic foot neuropathy but may have favorable systemic effects, as well.

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cecelia19 | @cecelia19 | Oct 5 11:21pm
In reply to @kforrest "don't stress out, hoping you find a solution." + (show)
@kforrest

don't stress out, hoping you find a solution.

Jump to this post

So do I and if I do, I’ll post what works. It is so strange, how some days are good but others so very bad. I don’t see a trend and that is difficult.

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1 reply
lewin | @lewin | Oct 6 3:14pm

So many on numerous websites echo your sentiments. The "advocacy groups" are doing very little. Government funding is needed---it is all being left up to Big Pharma. Write to senators, reps. and Foundation for Peripheral Neuropathy to urge them to increase funding. We spend so little money on research, but on building weapons and defense budget.

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mcamp9987 | @mcamp9987 | Oct 12 9:13pm

There are several videos out about Vitamin B1/Thiamine helping neuropathy a lot!

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joeh9841 | @joeh9841 | Oct 13 10:17am

Try alpha lipoic acid intramuscular injections. 1cc/25mg Once or twice/week.
Call a company called Defy Medical and they can get you the vial, syringes, needles. You can get a Qsite vial adapts from BD so you ca draw from the vial multiple times. ALA pills don’t work, but this does! Injections are in the hip area in muscle.

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bb0753 | @bb0753 | Oct 14 7:16am
In reply to @cecelia19 "So do I and if I do, I’ll post what works. It is so strange, how..." + (show)
@cecelia19

So do I and if I do, I’ll post what works. It is so strange, how some days are good but others so very bad. I don’t see a trend and that is difficult.

Jump to this post

The trend for me is the more I move during the day the better I feel. When I sit for extended time the worse I feel.

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1 reply
anoyymous123 | @anoyymous123 | Oct 14 7:46am

FDA APPROVED VYVGART HYTRULO FIRST NEW VTREATMENT FOR CIDP

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 14 7:59am
In reply to @anoyymous123 "FDA APPROVED VYVGART HYTRULO FIRST NEW VTREATMENT FOR CIDP" + (show)
@anoyymous123

FDA APPROVED VYVGART HYTRULO FIRST NEW VTREATMENT FOR CIDP

Jump to this post

@anoyymous123 - I thought I would share the link for you so that others can read more about the new treatment.

-- FDA approves treatment for chronic inflammatory demyelinating polyneuropathy (CIDP) in adults: https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-chronic-inflammatory-demyelinating-polyneuropathy-cidp-adults

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