Neuropathy?

Posted by somanyquestions @somanyquestions, Mar 19, 2025

My feet feel like they have socks on, I don’t; my genitals feel prickly, burn; I am a little incontinent; my scalp itches always, I have very low vitamin B (had B-12 injection, taking sublingual oral pill). I am taking Creon for my pancreas dysfunction; I have controlled diabetes. I’ve been to a urogynecologist ( no definitive answer), neurosurgeon (nerves in spine are not damaged enough to cause). Is it some kind of neuropathy? Who should I see next? Thank you.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for gnocchi @gnocchi

I just read your story - my body felt like a pin cushion all over and numbness and went to ER. They said lack of B12 as I am not a diabetic. B12 was ok so then they diagnosed me as sensory idiopathic neuropathy (of unknown cause). My dr prescribed the lowest dose of Lyrica - was awful - so fatigued that I could not walk to the car. I tried acupuncture but not sure if it helped. But THEN I got desperate and joined this Mayo Clinic Connect website and found out that alpha lipoic acid with vitamin B complex helped 90% better. I told my acupuncturist about it and she says she prescribes that for all her diabetic patients but I wasn't diabetic but she NEVER mentioned it. I was mad at her - she feels acupuncture helps some (temporary maybe) - $50 every visit. She did say don't worry about having too much B as your body pees out what it doesn't need. The nature store owner says he takes it too and it works. He only had one bottle left Source Naturals 600 mg taken better on an empty stomach if you don't have too much acid and with my vitamin B complex together. Anyway, you will be a happy person I promise you - it won't hurt you and is safe to take with other medications.

Jump to this post

@gnocchi
I received the exact same diagnosis after 14 mths. Now waiting on a 2nd opinion - neurologist and she is also a DO. We should connect if you want. I do ALA, B multi, tumeric and stopped statins 2 months ago. . It has pivoted and is much less pivoted since then and is much better. I also had my split AC deep cleaned. He found a remarkable amount of black mold. unfortunately I did not isolate. My 1st neurologist chose IVIG perfusion. Scheduled out for first treatment on Sept 28. One week 25g /day. Still debating. Hoping the 2nd opinion in play prior.

Eeeeeck! Infrared matt vibration plates actually make it flare more. Swimming & weights & meditation BEST! Take care of you and hope you find some relief soon. Hang in there!

REPLY
Profile picture for Miltiades @anargyrosm

@gnocchi Alpha Lipoic Acid seems to help

Jump to this post

@anargyrosm I would like to try Alpha Lipoic Acid but I have a few question for you:
1 did you ask your doctor about take it?
2 what supplements brand are you using?
3 what dosage per day?
4 any side effects?
Thank you very much

REPLY
Profile picture for julkun @julkun

@johnbishop Yes, a neurologist would be the specialist for diagnosing neuropathy. My neurologist then basically washed her hands of the problem. Sent me to pain management. Pain management doctors, or mine do not care to find the root cause. They deal only with the pain never looking at the root cause. When drugs don't work, other covered and non-covered "solutions" are tried. I have a spinal cord stimulator that does next to nothing when my pain flares up every single day. I've tried many devices, chiropractors, 2 different acupuncturists, piriformis surgery, PRP, Stem cell therapy and a host of other "solutions." Over the last 5 years I've had covid twice and 2 viruses. Each produced a fever. During the fever periods my neuropathy symptoms disappeared throughout my body. You would think Mayo clinic or Cleveland clinic would be interested in this. Nobody cared!!!! I just hate dealing with the medical profession. They seem to be just devoid of caring as the internet fake remedies. The combination of a knowledgeable and caring medical person is very rare these days. They can all go to XXXX.

Jump to this post

@julkun try taking Methylcobalim. That's B12. And stop alcohol.. I'm am ,84 with no arthritis or joint or muscle pain anywhere.

REPLY

A B12 injection is short term. Eat more B12 rich food like lambs fry and or mussels. Drink much less alcohol. Or take Methylcobalim. That's B12.

REPLY
Profile picture for jamessaxo @jamessaxo

@julkun try taking Methylcobalim. That's B12. And stop alcohol.. I'm am ,84 with no arthritis or joint or muscle pain anywhere.

Jump to this post

@jamessaxo I can't stop Alcohol because I never started. I don't drink at all, never have. And I've taken B12.

REPLY
Profile picture for julkun @julkun

@jamessaxo I can't stop Alcohol because I never started. I don't drink at all, never have. And I've taken B12.

Jump to this post

@julkun, Sorry julkun. I just guessed you may have drunk because most people with neuropathy are or have been drinkers. The alcohol numbs the billions of tiny villiing our intestine stopping absorbtion.

REPLY

I also have neuropathy, but am not a drinker at all.

REPLY
Profile picture for jamessaxo @jamessaxo

@julkun, Sorry julkun. I just guessed you may have drunk because most people with neuropathy are or have been drinkers. The alcohol numbs the billions of tiny villiing our intestine stopping absorbtion.

Jump to this post

@jamessaxo No need to apologize. I wonder if drinkers stop, does the neuropathy go away. Drinking is bad on so many levels.

REPLY
Profile picture for Phyllis D. @pmdel

I also have neuropathy, but am not a drinker at all.

Jump to this post

@pmdel Could you imagine how much worse we'd be if we did drink alcohol? Hope you find the answer to this painful disease. Get well!!!

REPLY
Profile picture for corneliagd @corneliagd

@anargyrosm I would like to try Alpha Lipoic Acid but I have a few question for you:
1 did you ask your doctor about take it?
2 what supplements brand are you using?
3 what dosage per day?
4 any side effects?
Thank you very much

Jump to this post

@corneliagd MD was informed, neither recommended nor not recommended it. 2. one CVS 600 mg. often if you buy one, the second bottle is 1/2 off. No side effects that I'm aware of. Seems to help a friend too. I also do twice a week Sanexas treatments which are covered by Medicare. Best wishes, G

REPLY
Please sign in or register to post a reply.