1. < Neuropathy

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?

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 16 7:31am
In reply to @lnorris232 "After living with severe neuropathy for 7 years, and having seen a wide variety of specialists..." + (show)
@lnorris232

After living with severe neuropathy for 7 years, and having seen a wide variety of specialists there was one significant blood test that had not been done. I finally found a Neurologist who was determined to help me find out why I had the nerve pain as well as a lot of other symptoms, such as chronic fatigue, wide spread pain, general feeling unwell. The best I could describe was like getting the flu, without ever getting sick. It turned out my B12 was extremely deficient. I was diagnosed with Pernicious Anemia and it was later determined caused by autoimmune problems. I am unable to absorb B12 from food or oral vitamin supplements and now take regular B12 injections. It has taken 3 years to get my B12 numbers to a level the doctors are pleased with. Unfortunately long term B12 deficiency and pernicious anemia can cause permanent nerve damage. I would advise anyone like yourself suffering from neuropathic pain in legs and feet of unknown origin to ask you doctor(s) about B12 testing.

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Hello @lnorris232, Welcome to Connect. It's good to hear that you have finally found out what was causing your symptoms. Thanks for sharing your experience and treatment. Here's some information from Mayo Clinic on the topic.

"Left untreated, a vitamin B-12 deficiency can lead to anemia, fatigue, muscle weakness, intestinal problems, nerve damage and mood disturbances. The recommended daily amount of vitamin B-12 for adults is 2.4 micrograms (mcg). Most people can get enough vitamin B-12 in the foods they eat."
-- Vitamin B-12 - Mayo Clinic: https://www.mayoclinic.org/drugs-supplements-vitamin-b12/art-20363663.

Now that your B12 numbers are better, has it lessened the nerve pain? Do you take any medications to help with nerve pain?

REPLY
lnorris232 | @lnorris232 | Nov 16 8:35am

Unfortunately, my B12 was so low for several years the nerve damage is not reversing. I take monthly b12 (cyanocobalamin 1000 MCG) injections to keep my numbers within a normal range. I lack intrinsic factor due to severe gastritis and cannot absorb B12 from foods or oral supplements.

I have tried and failed with gabapentin, lyrica, and cymbalta. I now take Tramadol for the pain. I am awaiting a trial at the end of this month of the Boston Scientifics SCS. I am hopeful for success.

REPLY
3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Nov 16 8:43am
In reply to @lnorris232 "Unfortunately, my B12 was so low for several years the nerve damage is not reversing. I..." + (show)
@lnorris232

Unfortunately, my B12 was so low for several years the nerve damage is not reversing. I take monthly b12 (cyanocobalamin 1000 MCG) injections to keep my numbers within a normal range. I lack intrinsic factor due to severe gastritis and cannot absorb B12 from foods or oral supplements.

I have tried and failed with gabapentin, lyrica, and cymbalta. I now take Tramadol for the pain. I am awaiting a trial at the end of this month of the Boston Scientifics SCS. I am hopeful for success.

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Have you tried any additional supplements to see if they might help with the nerve pain? The Foundation for Peripheral Neuropathy has a list of complementary and alternative treatments that include supplements that have shown to help some folks with neuropathy - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

REPLY
bb0753 | @bb0753 | Nov 17 8:25am
In reply to @lnorris232 "Unfortunately, my B12 was so low for several years the nerve damage is not reversing. I..." + (show)
@lnorris232

Unfortunately, my B12 was so low for several years the nerve damage is not reversing. I take monthly b12 (cyanocobalamin 1000 MCG) injections to keep my numbers within a normal range. I lack intrinsic factor due to severe gastritis and cannot absorb B12 from foods or oral supplements.

I have tried and failed with gabapentin, lyrica, and cymbalta. I now take Tramadol for the pain. I am awaiting a trial at the end of this month of the Boston Scientifics SCS. I am hopeful for success.

Jump to this post

Did your other symptoms such as fatigue and weakness go away?

REPLY
1 reply
lnorris232 | @lnorris232 | Nov 17 8:50am
In reply to @bb0753 "Did your other symptoms such as fatigue and weakness go away?" + (show)
@bb0753

Did your other symptoms such as fatigue and weakness go away?

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The extreme fatigue did go away. I still have some weakness in my legs but that is improving. Due to the severe neuropathy in my legs and feet, building muscle strength is a little complicated, but I am always working on trying to build more strength.

REPLY
pbrowni25 | @pbrowni25 | Nov 17 7:11pm
In reply to @lnorris232 "Unfortunately, my B12 was so low for several years the nerve damage is not reversing. I..." + (show)
@lnorris232

Unfortunately, my B12 was so low for several years the nerve damage is not reversing. I take monthly b12 (cyanocobalamin 1000 MCG) injections to keep my numbers within a normal range. I lack intrinsic factor due to severe gastritis and cannot absorb B12 from foods or oral supplements.

I have tried and failed with gabapentin, lyrica, and cymbalta. I now take Tramadol for the pain. I am awaiting a trial at the end of this month of the Boston Scientifics SCS. I am hopeful for success.

Jump to this post

I would be interested in that trial if available in Pa.?

Thanks

REPLY
lnorris232 | @lnorris232 | Nov 17 7:36pm

The trial was set up by my pain management provider. You might check with Boston Scientifics website, there is a lot of useful information regarding SCS.

REPLY
ladymae | @ladymae | Nov 21 11:18am

Fibromyalgia can happen...after surgery.... Research. Idiopathic NEUROPATHY.... My diagnosis Unexplained.... Fibromyalgia effects nerves, bones, muscles, tendons, pain disease. Maybe try calamari ... Brain scrambler treatments to kill pain signals... Maybe this will help you somewhat. Also for temporary fixes research essential oils, I buy garden of life organic and mix with unscented lotion... Ask Dr, check interactions with your meds.

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