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.

There are many videos and articles stating that Vitamin B1/Thiamine helps neuropathy greatly. Google Thiamine, Neuropathy

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@bb0753

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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Me too.

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Barefoot Shoes may be an answer! They claim to help Neuropathy because they have a wide toe box & they are very flexible. Mine arrived yesterday & they feel great - I felt like dancing for the first time in years…I’ll keep you posted but look them up on Amazon - they’re less expensive than all the snake oil out there.

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@solobeee1

Barefoot Shoes may be an answer! They claim to help Neuropathy because they have a wide toe box & they are very flexible. Mine arrived yesterday & they feel great - I felt like dancing for the first time in years…I’ll keep you posted but look them up on Amazon - they’re less expensive than all the snake oil out there.

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Is the brand, “Barefoot Shoes”?

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@mcamp9987

There are many videos and articles stating that Vitamin B1/Thiamine helps neuropathy greatly. Google Thiamine, Neuropathy

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Thank you! This is a new avenue for me to explore.

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My second day has been great. Check Barefoot Shoes on Amazon. Hard to figure the brands & prices. They are all very affordable.
GroundedFootwear for Women Men with Neuropathy, 2024 New Comfortable Lightweight Non-Slip Barefoot Shoes (Grey,13 Women/11 Men)
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$35.99
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FREE delivery Oct 28 - Nov 6

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@duquer

For more information about my Sanexas treatments, and their locations, You may call them at 702-315-2999 or 866-SANEXAS. (866-726-3927), and ask to talk to Debbie Hansen. Remember Everyone is different and treatment protocols may vary some due to their length of illness and damage to nerves. They are are there to help answer any your questions or concerns. Please let them know that I gave you this information so that your questions will be answered promptly. For the record, I have never been employed nor am I receiving any financial compensation from Sanexas.
RSTSANEXAS.COM

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Sanexa treatement is not covered by Medicare although approved by FDA.
I have to pay myself and just started the program twice a week for 16 sessions here in Seattle area.
I am diagnosed with SFN since 2022. They blame my diabetes type 2-although my A1C is between 5.8-6.5.
IMO, either Covid 19 or J&J vaxx got me this. I went to bed in perfect health and next morning I woke up with all these symptoms.
All my minerals,vitamins,blood work,lipide panels,kidney function, etc are normal,except the A1C.

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@valyruss

Sanexa treatement is not covered by Medicare although approved by FDA.
I have to pay myself and just started the program twice a week for 16 sessions here in Seattle area.
I am diagnosed with SFN since 2022. They blame my diabetes type 2-although my A1C is between 5.8-6.5.
IMO, either Covid 19 or J&J vaxx got me this. I went to bed in perfect health and next morning I woke up with all these symptoms.
All my minerals,vitamins,blood work,lipide panels,kidney function, etc are normal,except the A1C.

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I do hope that the Sanexas treatments give you relief like it has me.

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