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

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stallen | @stallen | Sep 18 8:06am
In reply to @cecelia19 "That was me - hiking, yard work, painting walls, enjoying life then life came to a..." + (show)
@cecelia19

That was me - hiking, yard work, painting walls, enjoying life then life came to a grinding halt. Mayo-Rochester is ranked #1 for Mayo and I’ve been there 10x for family members - I could give tours. The beauty of Mayo is you go there, you see all the specialists, have all the tests in a compressed window of time and at the end, they have all consulted - a team approach - and come up with a diagnosis and a plan. It is the Hogwarts of medicine. We’ve always left feeling so much better and more hopeful than when we got there. They don’t know what caused mine and I feel that it is important to know why so they potentially could keep this from progressing. Yesterday I started taking 100 mg Gabapentin 4x/day. I find that the lower dose spaced out causes a lot less brain fog than a higher dose all at once. I have to be able to drive - and think! Keep me posted and let me know what is helping you along the way. Communicating with others is helping me feel less alone.

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Hello…I too have neuropathy of unknown origin. If possible, try to develop some sort of “movement “ regimen….where it be daily walks, swimming etc. Sometimes walking isn’t possible…I find stationary bikes are good as there isn’t all the body weight on the back , legs and feet. If you can do a “movement “ routine of some sort daily it will help in your ability to get around and perhaps just as important…it help the mind as you feel a sense of accomplishment. I wish you success in finding relief.
Steve

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cecelia19 | @cecelia19 | Sep 18 12:46pm
In reply to @julbpat "I take 400 mg in the morning, and 600 mg at night. Seizure medications, by design,..." + (show)
@julbpat

I take 400 mg in the morning, and 600 mg at night. Seizure medications, by design, have a long half-life. They hang around in your system longer so you maintain a therapeutic level throughout the day.

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I didn’t know this. I can see that I’m not taking enough and it is good to know that it stays in your system for a more extended time.

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1 reply
julbpat | @julbpat | Sep 18 2:23pm
In reply to @cecelia19 "I didn’t know this. I can see that I’m not taking enough and it is good..." + (show)
@cecelia19

I didn’t know this. I can see that I’m not taking enough and it is good to know that it stays in your system for a more extended time.

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This is regarding Tegretol (carbamazepine). Sorry to confuse you!

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bettyg81pain | @bettyg81pain | Sep 19 6:47am
In reply to @duquer "Have you heard about the new Sanexas therapy for neuropathy pain? ? I started the Sanexas..." + (show)
@duquer

Have you heard about the new Sanexas therapy for neuropathy pain? ? I started the Sanexas treatment for neuropathy pain in January of last year. I have had really good results. I have written a story about my experience and would gladly share it with anyone. Please let me know.
https://connect.mayoclinic.org/comment/645606/

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Where are you having the Sanexas treatments?? How much are they costing?

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1 reply
duquer | @duquer | Sep 19 6:56am
In reply to @bettyg81pain "Where are you having the Sanexas treatments?? How much are they costing?" + (show)
@bettyg81pain

Where are you having the Sanexas treatments?? How much are they costing?

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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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1 reply
sf2021 | @sf2021 | Sep 19 6:54pm

If gabapentin alone does not work, try adding cymbalta. That really made a difference for me. Also I have not tried it yet but I’ve read low dose naltrexone works well for many people with a fewer side effects.

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1 reply
bobm47 | @bobm47 | Sep 20 6:46pm

Anyone dealing with chemo induced neuropathy? I don't have pain but numbness in both feet, finger tips, weakness in hands and unsteady feeling?

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1 reply
cecelia19 | @cecelia19 | Sep 20 9:42pm
In reply to @sf2021 "If gabapentin alone does not work, try adding cymbalta. That really made a difference for me...." + (show)
@sf2021

If gabapentin alone does not work, try adding cymbalta. That really made a difference for me. Also I have not tried it yet but I’ve read low dose naltrexone works well for many people with a fewer side effects.

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May I ask how much Gabapentin you take? I think I may not be taking enough.

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sf2021 | @sf2021 | Sep 21 10:39am

900mg per day (300mg, 3 times per day). I was reluctant to add duloxetine (Cymbalta) at first but it really made a difference. Good luck!

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1 reply
cecelia19 | @cecelia19 | Sep 21 11:19am
In reply to @sf2021 "900mg per day (300mg, 3 times per day). I was reluctant to add duloxetine (Cymbalta) at..." + (show)
@sf2021

900mg per day (300mg, 3 times per day). I was reluctant to add duloxetine (Cymbalta) at first but it really made a difference. Good luck!

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Thank you so much. Is the GABA making your ankles swell?

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