Severe Neuropathy in legs and feet and not a diabetic or alcoholic

Posted by jbb12 @jbb12, Sep 3 10:18am

Dealing with this neuropathy pain for over 3 years. Happened one month after I had an emergency appendectomy at the age of 70. Sudden onset of severe pain in legs and feet. Was not gradual pain. Been to 3 neurologists. Nothing has worked. I am not a diabetic and never drank alcohol. Tried different medication such as gabepentin, etc. tried epidurals, acupuncture, cryotherapy, stem cell therapy ($9000 which insurance did not cover). I have appointments with a fitness trainer to do my best to stay in shape, which exercising is getting so difficult. I am not overweight and have always been physically fit. I’ve had nerve tests, scans, etc. run with nothing conclusive. Said some stenosis. Next is doing an ablation on the nerve but don’t know if that will work either. Can anyone advise what to do next?

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

@bettyg81pain

I am pretty much in the same category as you are. What is your opinion of the Calmare treatments? I keep trying to do the research on them. Have you considered going to Mayo Clinic for their help? I seem to be getting nowhere with my current neurologist center-had almost ever test run with no answers!

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I have read others say the calmare treatment helped them with pain reduction.

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@burke1707

Numb feet has now moved up to my ankle! Really scared. What can I do?

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Hello @burke1707, Welcome to Connect. I also have numbness in my feet and ankles. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I think all of us have had that feeling of being scared about the progression of the neuropathy symptoms and what the future holds. The best thing that helped me was learning as much as I could about my diagnosis and condition along with the available treatments that might provide some relief. If you only have numbness and some tingling with no real pain like myself, as hard as it may seem, consider yourself part of the more fortunate 15 to 20 percent of folks with neuropathy.

Here is a good place to start learning more about neuropathy and what may help your symptoms - https://www.foundationforpn.org/living-well/

If you feel comfortable, can you share more details of your diagnosis and symptoms?

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@burke1707

Numb feet has now moved up to my ankle! Really scared. What can I do?

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Neuropathy is a complex symptom usually with an underlying disorder. There are many possible causes;
Diabetes
Chemotherapy
Alcohol use
Immune and auto immune disorders

Have you discussed with primary care and determined what causes yours and then you might be on a path to see a specialist, get relief

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@terry1976

Neuropathy is a complex symptom usually with an underlying disorder. There are many possible causes;
Diabetes
Chemotherapy
Alcohol use
Immune and auto immune disorders

Have you discussed with primary care and determined what causes yours and then you might be on a path to see a specialist, get relief

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My primary care dr threw her hands up in the air and literally said" I do not know anything else to tell you to do"!! None of these things apply! I was really sick with Covid when I woke up in the middle of the night screaming with leg pain!!

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@burke1707 - I'd like to underline what John (@johnbishop) said and if you are experiencing numbness, that tight sock feeling, the tingle in toes and feet, numbness and no pain, you are in fact very lucky. Yea, that sounds odd. However, the more time I've been a member of Connect and I see people that suffer with pain, my heart goes out to those folks. I experience back pain from a sports injury years ago and a fall in 2013. My PN is like John's, and I know I'm fortunate not to have pain as others experience. I'd like to suggest that, when possible, learn all you can about your condition. The knowledge you gain will help you through this. I needed to know all I could about my condition. As I gained knowledge, the acceptance became easier, and I found myself less fearful. Also, you may want to engage in a support group on zoom, several out there in all areas of the US. Might be helpful, you'll find you are not alone. Wish you the best! Ed

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@bettyg81pain

Exactly what plan of attack are you using? After the nerve stimulator didn’t work and neither did the epidural-my pain mgt doctor was out of a plan!!

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Hydrocodone every 6 hours but you must be careful. If you get euphoric stop taking immediately.

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I have had neuropathy in my feet for about five years - no pain and could walk several miles. I am also diabetic. This past April I started using a cane - not all the time - usually when the terrain was a little difficult. Very quickly my use of the cane became a necessity. A month ago I had to start using a walker and now I can hardly walk fifty yards without my legs shaking and feeling light headiness. I was admitted into Mayo Clinic in the neurology department, underwent several tests,
which were fine. Doctors told me that my problems were probably due to neuropathy. Went to another neurologist who said the same thing. Basically, it may or may not worse and physical therapy may help. I am very concerned how this will end up as it seems to be getting worse every day. I have heard, from reliable sources, that some people who were told that they were terminal, not neuropathy, went to India and received treatment that wasn't available in the United States and they recovered. I am going to look into this further, If anyone here has any information about successful or unsuccessful treatment in another country please let me know. Thanks. Margaret

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I started having numbness in my feet and lower legs up to my knees last year and am not diabetic either. My neurologist ran blood tests which showed that I had a toxic level of vitamin B6. Most people say that you can't overdose on a water-soluble vitamin but that is not true for those of us who have the MTHFR gene mutation. We absorb B6 into our tissues. My point is: Have them test your B6 (and B12 levels) if they haven't already. It took me about 3 months of getting off all B vitamins and drinking more water than usual to get back to normal.

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I'm on a tens device used by Cancer Centers of America for their chemo patients because I found out lately that chemo causes neuropathy. Wish my Anns doctor had told us that years ago.
Anyway, look into lose dose Naltrexone. I've read thst it vould help my neuropathy. Found a doctor group in Chicago thst off label prescribes it. Going to try it because tens unit and red light therapy don't seem to be helping.
Lou Anselmo

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@thurlibier

I have had neuropathy in my feet for about five years - no pain and could walk several miles. I am also diabetic. This past April I started using a cane - not all the time - usually when the terrain was a little difficult. Very quickly my use of the cane became a necessity. A month ago I had to start using a walker and now I can hardly walk fifty yards without my legs shaking and feeling light headiness. I was admitted into Mayo Clinic in the neurology department, underwent several tests,
which were fine. Doctors told me that my problems were probably due to neuropathy. Went to another neurologist who said the same thing. Basically, it may or may not worse and physical therapy may help. I am very concerned how this will end up as it seems to be getting worse every day. I have heard, from reliable sources, that some people who were told that they were terminal, not neuropathy, went to India and received treatment that wasn't available in the United States and they recovered. I am going to look into this further, If anyone here has any information about successful or unsuccessful treatment in another country please let me know. Thanks. Margaret

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Google low dose Naltrexone and auto immune disease. I'm going to get a prescription of it. Only costs 30 40 bucks at a compounding pharmacy.
It's a "of label" prescription. It is being used for 22 kinds of cancer and most auto immune diseases. Prepare to learn alot! Good luck.

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