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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@cecelia19

How did you think of this? What is it in the mustard that is therapeutic? Thanks so much!

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I tried the Tbsp. Of mustard last night and helped. Going to continue with it. My guess is the curcumin/turmeric is the magic as it’s anti- inflammatory.

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@jadownard

What kind of neuropathy do you have and what kind of yellow mustard do you take?

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I used French’s mustard and had relief.

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@bb0753

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

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I found out in the fifth week that I was allergic to Gabapentin. My throat closed.
Tough way to lose weight.
Be careful!

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@jonelson4

I’m not sure why it works-the vinegar and turmeric perhaps?

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Glad it’s working, assuming nothing do you eat the mustard or rub it on your body?
Glad it helps u my friend!

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@valyruss

$6,400 here in Seattle area for X 16 sessions. Insurance won't cover, although Sanexa is approved by FDA.
Cost is including a thorough medical examination as well-nerves sensitivity, nerves response, ABI etc
I would be curious what is the cost in some other states.

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Did it help you? How often did you have a treatment and how many?

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@bettyg81pain

Did it help you? How often did you have a treatment and how many?

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I'm on the second week-they said I should start to see results on the third week.
PS. You need to do a lot of research what is causing you peripheral neuropathy.
Just to name a few:
-lack of B12 and folate
-diabetes
-nerves inflammation ( if yes, then what is causing that)
-pinched nerve on back vertebrae or neck
-guillen barre
-autoimune desease
-peripheral poor blood circulation
-small stroke
There's a lot of info on line.
Two neurologists done zillions of tests on me and couldn't figure out how I ended up with small fiber neuropathy.

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@jchet

I used French’s mustard and had relief.

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I have SFPN.

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@mustii

Glad it’s working, assuming nothing do you eat the mustard or rub it on your body?
Glad it helps u my friend!

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You just swallow a Tbsp. Of mustard.

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