I'm 78 and have had peripheral neuropathy in my lower extremities for over 25 years. It's getting worse as noted in my latest EMGs. However, it's now in my upper extremities along with vestibulopathy (balance issues).
As a disabled Navy veteran, the VA says I have polyneuropathy as a result of toxic exposure (Agent Orange) from my military service in Vietnam.
I'm currently seeing a pain management doctor outside of VA. I am doing pt and taking a regimen of 1800mg of Gabapentin (initially prescribed for migraines) and 500 mg of Tyenol, as needed. I started out with Tramadol, but stopped that due to side effects of more headaches. The pt is helping with my balance, but not the chronic pain. I stay as active as I can can which helps diminish my feet and leg pain.
Open for suggestions, but right now just dealing with it.
Binh, seems most of your bodies nerves have lost their protecting insulation,MYELIN.
Myelin needs vitamin B12 . Alcohol reduces B12 absorption. Look up METHYLCOBALAMIN.
They are a class of drugs that are used to treat depression or anxiety, but they calmed my nerves down as well, my neuropathy is still slowly progressing though. They say I have Lumbar Radiculopathy which is a form of neuropathy but I am skeptical because the numbness is so symmetrical
Binh, seems most of your bodies nerves have lost their protecting insulation,MYELIN.
Myelin needs vitamin B12 . Alcohol reduces B12 absorption. Look up METHYLCOBALAMIN.
They are a class of drugs that are used to treat depression or anxiety, but they calmed my nerves down as well, my neuropathy is still slowly progressing though. They say I have Lumbar Radiculopathy which is a form of neuropathy but I am skeptical because the numbness is so symmetrical
Mea Culpa! Need to correct a previous post I made re: using R-Alpha Lipoic Acid to help PN.
I’m 86 and have been dealing with idiopathic, non-diabetic progressive PN in both feet and hands for about 10 years now.
Around last December I made a change adding three daily capsules of Dynamic Nerve to my daily regimen, primarily because of its 200 mg ALA content. Also increased my daily Life Extension 283 mg R-ALA to three capsules daily giving me a total of nearly 1500 mg daily. Simultaneously I noticed a small improvement in my PN which I credited to the ALA, perhaps an error. After three months of some PN relief, in mid-March the PN came roaring back with a vengeance, no change in supplements.
Last week, for another problem, I began a regimen of 40 mg of prednisone daily and surprisingly my PN began to recede again. Only then did I realize that I had done the exact same steroid treatment near the end of last year also about the same time as the ALA increase.
Conclusion…It may be either the prednisone alone (logical, should have figured that out) or in synergy with the ALA that has helped to slightly modify the PN
(now mostly just numbness but little pain) and it may only last three months after I stop the steroids but I’ll take it.
Sincerely hope this info is helpful and that my previous post didn’t mislead anyone. PN is a terrible disease and I find most neurologists only treat it by prescribing masking meds like Gabipentin, etc. that I won’t take. We can pray there will be a cure somewhere, somehow… Hopefully Mayo will find it for us.
Meanwhile we can be grateful just for life itself.
Hi John-- I've had neuropathy and had small success in treating it with essential oils. Recently my attention has been drawn to the possibility of foot PN being caused by mitochondrial dysfunction. There seems to be little literature on this or I've been using the wrong keywords in my searches. Do you know anything about this? Steve
Hi John-- I've had neuropathy and had small success in treating it with essential oils. Recently my attention has been drawn to the possibility of foot PN being caused by mitochondrial dysfunction. There seems to be little literature on this or I've been using the wrong keywords in my searches. Do you know anything about this? Steve
I'm 78 and have had peripheral neuropathy in my lower extremities for over 25 years. It's getting worse as noted in my latest EMGs. However, it's now in my upper extremities along with vestibulopathy (balance issues).
As a disabled Navy veteran, the VA says I have polyneuropathy as a result of toxic exposure (Agent Orange) from my military service in Vietnam.
I'm currently seeing a pain management doctor outside of VA. I am doing pt and taking a regimen of 1800mg of Gabapentin (initially prescribed for migraines) and 500 mg of Tyenol, as needed. I started out with Tramadol, but stopped that due to side effects of more headaches. The pt is helping with my balance, but not the chronic pain. I stay as active as I can can which helps diminish my feet and leg pain.
Open for suggestions, but right now just dealing with it.
I'm 78 and have had peripheral neuropathy in my lower extremities for over 25 years. It's getting worse as noted in my latest EMGs. However, it's now in my upper extremities along with vestibulopathy (balance issues).
As a disabled Navy veteran, the VA says I have polyneuropathy as a result of toxic exposure (Agent Orange) from my military service in Vietnam.
I'm currently seeing a pain management doctor outside of VA. I am doing pt and taking a regimen of 1800mg of Gabapentin (initially prescribed for migraines) and 500 mg of Tyenol, as needed. I started out with Tramadol, but stopped that due to side effects of more headaches. The pt is helping with my balance, but not the chronic pain. I stay as active as I can can which helps diminish my feet and leg pain.
Open for suggestions, but right now just dealing with it.
I am 63 and have had a MGUS caused by an M protein elevation which causes raised immune system activity because it is tricked into thinking something needs to be destroyed (diagnosed about 15 years ago). The result is progressive destruction of Myelin sheath and nerve due to the immune system attack. I have feet numbness some leg issues and minor numbness in both arms and hands.
I still have strength and balance. My diet is predominantly healthy. Alcohol and sugar cause inflammation which temporarily elevates the side effects.
My neuropathy is incurable so I manage my health and exercise to give me the best quality of life I can achieve.
I am exploring Rituximab and previously was in a trial for Calquence.
Anyone with neuropathy needs a solid partnership with a neurologist and a hemotologist for a treatment plan IMO.
Binh, seems most of your bodies nerves have lost their protecting insulation,MYELIN.
Myelin needs vitamin B12 . Alcohol reduces B12 absorption. Look up METHYLCOBALAMIN.
They are a class of drugs that are used to treat depression or anxiety, but they calmed my nerves down as well, my neuropathy is still slowly progressing though. They say I have Lumbar Radiculopathy which is a form of neuropathy but I am skeptical because the numbness is so symmetrical
Thanks. I take Vit B12- 1000mcg/daily.
I was never a drug taker. I hate drugs. I ignore it. I have not gotten a diagnosis yet. I don't know what kind of doc to go to.
Mea Culpa! Need to correct a previous post I made re: using R-Alpha Lipoic Acid to help PN.
I’m 86 and have been dealing with idiopathic, non-diabetic progressive PN in both feet and hands for about 10 years now.
Around last December I made a change adding three daily capsules of Dynamic Nerve to my daily regimen, primarily because of its 200 mg ALA content. Also increased my daily Life Extension 283 mg R-ALA to three capsules daily giving me a total of nearly 1500 mg daily. Simultaneously I noticed a small improvement in my PN which I credited to the ALA, perhaps an error. After three months of some PN relief, in mid-March the PN came roaring back with a vengeance, no change in supplements.
Last week, for another problem, I began a regimen of 40 mg of prednisone daily and surprisingly my PN began to recede again. Only then did I realize that I had done the exact same steroid treatment near the end of last year also about the same time as the ALA increase.
Conclusion…It may be either the prednisone alone (logical, should have figured that out) or in synergy with the ALA that has helped to slightly modify the PN
(now mostly just numbness but little pain) and it may only last three months after I stop the steroids but I’ll take it.
Sincerely hope this info is helpful and that my previous post didn’t mislead anyone. PN is a terrible disease and I find most neurologists only treat it by prescribing masking meds like Gabipentin, etc. that I won’t take. We can pray there will be a cure somewhere, somehow… Hopefully Mayo will find it for us.
Meanwhile we can be grateful just for life itself.
Hi John-- I've had neuropathy and had small success in treating it with essential oils. Recently my attention has been drawn to the possibility of foot PN being caused by mitochondrial dysfunction. There seems to be little literature on this or I've been using the wrong keywords in my searches. Do you know anything about this? Steve
Hi @snagydude, Here are some articles I found searching for "mitochondrial dysfunction":
-- Mitochondrial dysfunction: mechanisms and advances in therapy
https://www.nature.com/articles/s41392-024-01839-8
-- Mitochondrial Disorders:
https://www.ninds.nih.gov/health-information/disorders/mitochondrial-disorders
Here are some YouTube videos from UCLA Health:
-- Methods to Avoid Mitochondrial Dysfunction and Enhance Mental Well Being - https://www.youtube.com/watch?v=e_amGl6Fic4
-- Causes of Mitochondrial Dysfunction, Links to ADHD and Autism, Prevention & Treatment Tips l Part B - https://www.youtube.com/watch?v=O4bIVfHplX8
-- The Domino Effect: Mitochondrial Dysfunction, Insulin Resistance, and Mental Illness - https://www.youtube.com/watch?v=Czf3-D64gTo
Hope this helps...
Tylenol … I have about 6-9 oz glass of wine with my meal every night. Is that bad? I have Neuropathy in my Hands & Feet.
I am 63 and have had a MGUS caused by an M protein elevation which causes raised immune system activity because it is tricked into thinking something needs to be destroyed (diagnosed about 15 years ago). The result is progressive destruction of Myelin sheath and nerve due to the immune system attack. I have feet numbness some leg issues and minor numbness in both arms and hands.
I still have strength and balance. My diet is predominantly healthy. Alcohol and sugar cause inflammation which temporarily elevates the side effects.
My neuropathy is incurable so I manage my health and exercise to give me the best quality of life I can achieve.
I am exploring Rituximab and previously was in a trial for Calquence.
Anyone with neuropathy needs a solid partnership with a neurologist and a hemotologist for a treatment plan IMO.
I have been diagnosed with neuropathy.