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.

valyruss | @valyruss | Oct 18 1:13pm

$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.

valyruss | @valyruss | Oct 18 1:15pm

In reply to @anoyymous123 "FDA JUST APPROVED VYVGART HYTRULO FOR CIDP-WORTH A TRY?" + (show)

Before you take that you want to make sure your neurologist is really diagnosing you with CIDP.

valyruss | @valyruss | Oct 18 1:18pm

In reply to @mcamp9987 "There are many videos and articles stating that Vitamin B1/Thiamine helps neuropathy greatly. Google Thiamine, Neuropathy" + (show)

Equally too much Vit. B12 is causing all peripheral symptoms. You need a complete mineral and vitamins test-out of pocket cost at Lab work is about $1,000.

jonelson4 | @jonelson4 | Oct 19 7:10am

In reply to @jadownard "What kind of neuropathy do you have and what kind of yellow mustard do you take?" + (show)

Just regular yellow mustard. Heinz brand
Ingredients-distilled white vinegar, mustard seed, water, salt, turmeric, natural flavor and spices.

jonelson4 | @jonelson4 | Oct 19 7:19am

In reply to @cecelia19 "How did you think of this? What is it in the mustard that is therapeutic? Thanks..." + (show)

I have used yellow mustard for leg cramps in the middle of the night and noticed the burning and tingling in my feet subsided as well, so I thought I’d try the mustard before bed and before cramps to see if it prevented them. It has been working!