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Desperate: Is there any hope for neuropathy?
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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Have the Sanexa treatments helped you? Obviously they have or you would not be having them-how much do the treatments cost? Thanks!!
FDA JUST APPROVED VYVGART HYTRULO FOR CIDP-WORTH A TRY?
Just thought I would share this in case it helps anyone else. In addition to exercising daily and eating high protein, low carb, I have been taking 1 T of yellow mustard before bed. It not only has helped prevent the leg cramps but the tingling and burning in my feet has been much less!
I just started. They said I should see the improvements starting on the third week.
I quoted the cost for people so they can compare it.
I just started. They said improvements starting on the third week.
It took me over three months. Have you read my story here?
https://connect.mayoclinic.org/comment/645606/
What you think?
How did you think of this? What is it in the mustard that is therapeutic? Thanks so much!
Yes I did. Due to your former bad shape me think you did experience a recovery miracle thru Sanexas.
I only lost some feeling and diagnosed with small fiber neuropathy. My nerves conduction are good and my large fibers are OK.
They inject me with B12 and some other stuff before the session. Today got the second one.
My walking is OK but terrible symptoms: burning, pricks, needles, numbness and muscle tightness. All of these due to SFN.
Two neurologist done all possible testing and only put me on Gababentin.
What kind of neuropathy do you have and what kind of yellow mustard do you take?
I can’t seem to find the cost??
Would like to know. Thanks!!