I recently had an EMG, the diagnosis is mild-moderate Peripheral Neuropathy. I feel very fortunate in comparison to what I am reading here.
My PN feels like someone has both hands on my ankles and twists each other in opposite directions. I have had only two episodes in the last few months where I experienced total leg pain and only one was during the night.
Thinking back on this over the last year I remember times when I would have a misstep in my movements. I thought that it was possibly an equilibrium ear issue, but now I know it was the beginning of PN.
I actually feel that having two COVID shots and two boosters is what triggered it for me. I am done with the boosters forever.
I really hope that it does not progress to a point where I would need to consider an Rx, I have no desire to add any meds if possible.
I purchased a book titled "Defeat Neuropathy Now...In Spite Of Your Doctor". It is written by two doctors who operate the San Antonio Neuropathy Center in San Antonio, TX at this link https://nervedoctor.info/
In their book, they delve into a listing of medications known to cause Neuropathy as well as some OTC items. Based on what they say I have dropped two meds I was taking and switched to another. This clinic markets two products and I am taking one of them Nuphoria CM Gold. Their other product is Nuphoria CM Nerve Defense which my PCP said she would not recommend due to a high Vitamin E level. She said that could cause bleeding.
My PCP said with there being no cure she could only recommend a product named Wise Men Healing Balm with Frankincense and Myrrh Essential Oils and that does offer relief in my symptoms. Use this link https://wisemenhealing.com/
I have read that vibration therapy is in its infancy. I try to use that daily in hopes that it will help with my balance which is not a big issue but an issue at this point.
@golfgame
If I were reading a book I’d like to know why they wrote it and when the author is selling products that could cure/help Neuropathy I think I found the answer and would immediately put it where it belongs, in the garbage or a roaring fire.
I’d give more credence to your doctor's opinion than a couple people selling products under the guise of being physicians. The only help they probably gave you was how to disconnect from your money. There are new books, pills, and other money separation devices coming out daily with many ready to hand over their hard-earned money to them. Depending how much vitamin E are in those pills, perhaps the author will have a cure for whatever bleeding disorder or other problem you may have or be able to cure you of your hemorrhaging stroke that may be lurking. Sometimes neuropathy gets better like mine did. My neuropathy was most likely caused by seizure medication. That medication became unstable, and regardless of my dose was always at a toxic level so I had to switch seizure medications. Sometime later, the horrible, painful sensations went away and were replaced with numbness. I think it would be better to spend money on trying to find what actually caused the neuropathy, than try to cure it with some magic pill. I’m not about to spend my money to line someone else’s pockets, whose intention it was to cheat me.
Just my 2 cents worth.
Take care,
Jake
I have found Bemer therapy mat the very best. It has changed my neuropathy. It’s pricey they’re about $6000 but they truly work. It’s made a 1/3 difference in my neuropathy. I’ve only used for three weeks but I have high hopes. my legs are much more stable and I can walk through the day. I’m nowhere near 50% but I’ll tell you I am highly encouraged and it was worth every cent . I highly encourage everyone to look at this product. It’s the only thing I have found useful. I have researched everything I mean everything. I know I will never find the cause of my neuropathy because I do not have diabetes. I’ve take every vitamin on the shelf tried everything and I am telling you this Bemer has been tremendous for me. I encourage you all to do your due diligence on it
@golfgame
If I were reading a book I’d like to know why they wrote it and when the author is selling products that could cure/help Neuropathy I think I found the answer and would immediately put it where it belongs, in the garbage or a roaring fire.
I’d give more credence to your doctor's opinion than a couple people selling products under the guise of being physicians. The only help they probably gave you was how to disconnect from your money. There are new books, pills, and other money separation devices coming out daily with many ready to hand over their hard-earned money to them. Depending how much vitamin E are in those pills, perhaps the author will have a cure for whatever bleeding disorder or other problem you may have or be able to cure you of your hemorrhaging stroke that may be lurking. Sometimes neuropathy gets better like mine did. My neuropathy was most likely caused by seizure medication. That medication became unstable, and regardless of my dose was always at a toxic level so I had to switch seizure medications. Sometime later, the horrible, painful sensations went away and were replaced with numbness. I think it would be better to spend money on trying to find what actually caused the neuropathy, than try to cure it with some magic pill. I’m not about to spend my money to line someone else’s pockets, whose intention it was to cheat me.
Just my 2 cents worth.
Take care,
Jake
Thanks for your reply and thoughts. What you say has merit and makes sense to me. Being new to PN makes it very hard to find substantive, reliable information and direction.
Any direction or links would be appreciated. I am non-diabetic or even pre-diabetic. I actually believe that the series of COVID shots may have been the trigger as the timeline lines up.
My PN has recently been really bad and just wondering if anyone out there has experienced the same things I have been going through? For no apparent reason, I started feeling like I was having continual "charlie horses" [best way to describe it] in both legs and feet. Not the full-fledged 100% type, but I would describe them as mid-way, but they started and became 24hrs/day! I do get the charlie horses frequently with my PN and have to walk them out, but these were a constant state of charlie horses. Very painful and disabling. All the while, the numbness, tingling, biting pains, burning, etc., was out of control on top of that. [Knock on wood], it seems to be a little better this AM, but what an experience this has been! I take 1800-2300 mg Gabapentin a day, along with the same mg's of X-strength Tylenol, and that just wasn't cutting it! I also have started experiencing tingling in the tips of the fingers of my R hand, and numbness in both hands, which has come on all of a sudden, and wonder if that could be PN beginning in my fingers/hands? I have had carpal tunnel both wrists for years, and that is related to PN, but I have never had this feeling in the tips of my fingers and the numbness in my hands so frequently. Anyone?
P
I just had a consultation today, leading up to my byopsis for small fiber neuropathy next week. I have known this neurologist for awhile. This is the first time we have met since my diagnosis of Sjogren's by my new rheumatologist and the neurologist agreed. "Seems Sjogren's can do anything it wants with the nervous system." He mused. Since I don't have regular symptoms of neuropathy, I have been hard to diagnose. I just mention it because it would be something to "check off the list" if you had odd symptoms.
@golfgame
If I were reading a book I’d like to know why they wrote it and when the author is selling products that could cure/help Neuropathy I think I found the answer and would immediately put it where it belongs, in the garbage or a roaring fire.
I’d give more credence to your doctor's opinion than a couple people selling products under the guise of being physicians. The only help they probably gave you was how to disconnect from your money. There are new books, pills, and other money separation devices coming out daily with many ready to hand over their hard-earned money to them. Depending how much vitamin E are in those pills, perhaps the author will have a cure for whatever bleeding disorder or other problem you may have or be able to cure you of your hemorrhaging stroke that may be lurking. Sometimes neuropathy gets better like mine did. My neuropathy was most likely caused by seizure medication. That medication became unstable, and regardless of my dose was always at a toxic level so I had to switch seizure medications. Sometime later, the horrible, painful sensations went away and were replaced with numbness. I think it would be better to spend money on trying to find what actually caused the neuropathy, than try to cure it with some magic pill. I’m not about to spend my money to line someone else’s pockets, whose intention it was to cheat me.
Just my 2 cents worth.
Take care,
Jake
There are articles on you tube by a research neurologist Dr Anna Outlander google her. Her research starts back before 2018 into neurology. One of the things my neurologist has banged into my head is if you can’t find the etiology (cause) you can’t find out how to treat the neuropathy. I believe mine is due to hypothyroidism but when I talked to my neurologist and pain management doctor in Texas they had heard of her research and have decided to refer me. Mine is progressiving really fast.
Theee is additional testing she does that my doctors have not done. I am hoping to find out more
I have PN from the waist down, from nerve damage caused by a tumor in my spine. Tumor was removed in '05, but the damage persists. I tried gabapentin, which just gave me a weird feeling in my legs (which are the most affected part), and lyrica (lowest dose), didn't seem to do anything. What I found out helps tremendously: exercise (low impact, staying well hydrated and taking magnesium pills every night before bed. If I don't, I get a burning sensation on my feet, and like electricity is running through my legs.
I see ads for new "cures" or solutions, but haven't tried any of them. If anybody has found a treatment that works, rather than masks the symptoms (like gabapentin, etc), please reply, or post it here. Thanks
I have PN from the waist down, from nerve damage caused by a tumor in my spine. Tumor was removed in '05, but the damage persists. I tried gabapentin, which just gave me a weird feeling in my legs (which are the most affected part), and lyrica (lowest dose), didn't seem to do anything. What I found out helps tremendously: exercise (low impact, staying well hydrated and taking magnesium pills every night before bed. If I don't, I get a burning sensation on my feet, and like electricity is running through my legs.
I see ads for new "cures" or solutions, but haven't tried any of them. If anybody has found a treatment that works, rather than masks the symptoms (like gabapentin, etc), please reply, or post it here. Thanks
Hello @lastnerve, Welcome to Connect. Most of the treatments I've seen just mask or provide relief for the neuropathy symptoms. There really is no cure for neuropathy as far as I know. There are a lot of complementary and alternative treatments that people have found helpful. The Foundation for Peripheral Neuropathy has a list on their website here - https://www.foundationforpn.org/treatments/.
You mentioned exercise along with staying hydrated and taking magnesium pills before bed at night help with night time burning sensation. There is another discussion you might find helpful on the topic here:
--- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/.
Another thought I had since you mentioned it started after a tumor was removed in your spine and exercise seems to help, you might want to look into Myofascial Release Therapy to see if that might help. There is a discussion on MFR with more information:
--- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.
Hello @lastnerve, Welcome to Connect. Most of the treatments I've seen just mask or provide relief for the neuropathy symptoms. There really is no cure for neuropathy as far as I know. There are a lot of complementary and alternative treatments that people have found helpful. The Foundation for Peripheral Neuropathy has a list on their website here - https://www.foundationforpn.org/treatments/.
You mentioned exercise along with staying hydrated and taking magnesium pills before bed at night help with night time burning sensation. There is another discussion you might find helpful on the topic here:
--- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/.
Another thought I had since you mentioned it started after a tumor was removed in your spine and exercise seems to help, you might want to look into Myofascial Release Therapy to see if that might help. There is a discussion on MFR with more information:
--- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.
Thank you @johnbishop! I appreciate you taking the time to respond, and will look at the info links you provide.
Never heard of MRT, but sounds interesting!
In my case, I know that the tumor was crushing the nerves inside the spine canal, but I only became aware of it when I could no longer jump (used to be a competitive volleyball player).
Meanwhile, 3 years went by, with 7 different doctors each giving me a different diagnosis, before they did an MRI and found the tumor. By then, it had caused a lot of damage. I think I've recovered about 80% of my mobility through exercise, but I'm afraid the NP is not going away EVER.
Today, I came across an ad for Nooro Foot Massager, have seen a ton of new gadgets hit the market (never tried any of them), but I figured that some advancements would have been made since my tumor removal.
When googling reviews for the Nooro, this forum popped up, and I decided to investigate. It's interesting to see how many different situations are out there, and the different approaches and methods people try. While we're all in bad situation, it's great to see that I'm not the only one with this condition, so hopefully someone will come up with a cure/solution for it during our lifetime.
Again, I appreciate your help, and will do more reading, especially on what you've kindly provided.
Thank you @johnbishop! I appreciate you taking the time to respond, and will look at the info links you provide.
Never heard of MRT, but sounds interesting!
In my case, I know that the tumor was crushing the nerves inside the spine canal, but I only became aware of it when I could no longer jump (used to be a competitive volleyball player).
Meanwhile, 3 years went by, with 7 different doctors each giving me a different diagnosis, before they did an MRI and found the tumor. By then, it had caused a lot of damage. I think I've recovered about 80% of my mobility through exercise, but I'm afraid the NP is not going away EVER.
Today, I came across an ad for Nooro Foot Massager, have seen a ton of new gadgets hit the market (never tried any of them), but I figured that some advancements would have been made since my tumor removal.
When googling reviews for the Nooro, this forum popped up, and I decided to investigate. It's interesting to see how many different situations are out there, and the different approaches and methods people try. While we're all in bad situation, it's great to see that I'm not the only one with this condition, so hopefully someone will come up with a cure/solution for it during our lifetime.
Again, I appreciate your help, and will do more reading, especially on what you've kindly provided.
If exercise helps you then adding Acetyl L Carnitine may help even further. Research shows this is helpful for peripheral neuropathy including from damage such as yours. This helps to bring more oxygen to the body during exercise.
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@golfgame
If I were reading a book I’d like to know why they wrote it and when the author is selling products that could cure/help Neuropathy I think I found the answer and would immediately put it where it belongs, in the garbage or a roaring fire.
I’d give more credence to your doctor's opinion than a couple people selling products under the guise of being physicians. The only help they probably gave you was how to disconnect from your money. There are new books, pills, and other money separation devices coming out daily with many ready to hand over their hard-earned money to them. Depending how much vitamin E are in those pills, perhaps the author will have a cure for whatever bleeding disorder or other problem you may have or be able to cure you of your hemorrhaging stroke that may be lurking. Sometimes neuropathy gets better like mine did. My neuropathy was most likely caused by seizure medication. That medication became unstable, and regardless of my dose was always at a toxic level so I had to switch seizure medications. Sometime later, the horrible, painful sensations went away and were replaced with numbness. I think it would be better to spend money on trying to find what actually caused the neuropathy, than try to cure it with some magic pill. I’m not about to spend my money to line someone else’s pockets, whose intention it was to cheat me.
Just my 2 cents worth.
Take care,
Jake
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Helpful -
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4 ReactionsI have found Bemer therapy mat the very best. It has changed my neuropathy. It’s pricey they’re about $6000 but they truly work. It’s made a 1/3 difference in my neuropathy. I’ve only used for three weeks but I have high hopes. my legs are much more stable and I can walk through the day. I’m nowhere near 50% but I’ll tell you I am highly encouraged and it was worth every cent . I highly encourage everyone to look at this product. It’s the only thing I have found useful. I have researched everything I mean everything. I know I will never find the cause of my neuropathy because I do not have diabetes. I’ve take every vitamin on the shelf tried everything and I am telling you this Bemer has been tremendous for me. I encourage you all to do your due diligence on it
Thanks for your reply and thoughts. What you say has merit and makes sense to me. Being new to PN makes it very hard to find substantive, reliable information and direction.
Any direction or links would be appreciated. I am non-diabetic or even pre-diabetic. I actually believe that the series of COVID shots may have been the trigger as the timeline lines up.
-
Like -
Helpful -
Hug
1 ReactionMy PN has recently been really bad and just wondering if anyone out there has experienced the same things I have been going through? For no apparent reason, I started feeling like I was having continual "charlie horses" [best way to describe it] in both legs and feet. Not the full-fledged 100% type, but I would describe them as mid-way, but they started and became 24hrs/day! I do get the charlie horses frequently with my PN and have to walk them out, but these were a constant state of charlie horses. Very painful and disabling. All the while, the numbness, tingling, biting pains, burning, etc., was out of control on top of that. [Knock on wood], it seems to be a little better this AM, but what an experience this has been! I take 1800-2300 mg Gabapentin a day, along with the same mg's of X-strength Tylenol, and that just wasn't cutting it! I also have started experiencing tingling in the tips of the fingers of my R hand, and numbness in both hands, which has come on all of a sudden, and wonder if that could be PN beginning in my fingers/hands? I have had carpal tunnel both wrists for years, and that is related to PN, but I have never had this feeling in the tips of my fingers and the numbness in my hands so frequently. Anyone?
P
-
Like -
Helpful -
Hug
1 ReactionI just had a consultation today, leading up to my byopsis for small fiber neuropathy next week. I have known this neurologist for awhile. This is the first time we have met since my diagnosis of Sjogren's by my new rheumatologist and the neurologist agreed. "Seems Sjogren's can do anything it wants with the nervous system." He mused. Since I don't have regular symptoms of neuropathy, I have been hard to diagnose. I just mention it because it would be something to "check off the list" if you had odd symptoms.
-
Like -
Helpful -
Hug
2 ReactionsThere are articles on you tube by a research neurologist Dr Anna Outlander google her. Her research starts back before 2018 into neurology. One of the things my neurologist has banged into my head is if you can’t find the etiology (cause) you can’t find out how to treat the neuropathy. I believe mine is due to hypothyroidism but when I talked to my neurologist and pain management doctor in Texas they had heard of her research and have decided to refer me. Mine is progressiving really fast.
Theee is additional testing she does that my doctors have not done. I am hoping to find out more
-
Like -
Helpful -
Hug
2 ReactionsI have PN from the waist down, from nerve damage caused by a tumor in my spine. Tumor was removed in '05, but the damage persists. I tried gabapentin, which just gave me a weird feeling in my legs (which are the most affected part), and lyrica (lowest dose), didn't seem to do anything. What I found out helps tremendously: exercise (low impact, staying well hydrated and taking magnesium pills every night before bed. If I don't, I get a burning sensation on my feet, and like electricity is running through my legs.
I see ads for new "cures" or solutions, but haven't tried any of them. If anybody has found a treatment that works, rather than masks the symptoms (like gabapentin, etc), please reply, or post it here. Thanks
-
Like -
Helpful -
Hug
2 ReactionsHello @lastnerve, Welcome to Connect. Most of the treatments I've seen just mask or provide relief for the neuropathy symptoms. There really is no cure for neuropathy as far as I know. There are a lot of complementary and alternative treatments that people have found helpful. The Foundation for Peripheral Neuropathy has a list on their website here - https://www.foundationforpn.org/treatments/.
You mentioned exercise along with staying hydrated and taking magnesium pills before bed at night help with night time burning sensation. There is another discussion you might find helpful on the topic here:
--- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/.
Another thought I had since you mentioned it started after a tumor was removed in your spine and exercise seems to help, you might want to look into Myofascial Release Therapy to see if that might help. There is a discussion on MFR with more information:
--- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.
Have you heard of Myofascial Release Therapy?
-
Like -
Helpful -
Hug
3 ReactionsThank you @johnbishop! I appreciate you taking the time to respond, and will look at the info links you provide.
Never heard of MRT, but sounds interesting!
In my case, I know that the tumor was crushing the nerves inside the spine canal, but I only became aware of it when I could no longer jump (used to be a competitive volleyball player).
Meanwhile, 3 years went by, with 7 different doctors each giving me a different diagnosis, before they did an MRI and found the tumor. By then, it had caused a lot of damage. I think I've recovered about 80% of my mobility through exercise, but I'm afraid the NP is not going away EVER.
Today, I came across an ad for Nooro Foot Massager, have seen a ton of new gadgets hit the market (never tried any of them), but I figured that some advancements would have been made since my tumor removal.
When googling reviews for the Nooro, this forum popped up, and I decided to investigate. It's interesting to see how many different situations are out there, and the different approaches and methods people try. While we're all in bad situation, it's great to see that I'm not the only one with this condition, so hopefully someone will come up with a cure/solution for it during our lifetime.
Again, I appreciate your help, and will do more reading, especially on what you've kindly provided.
-
Like -
Helpful -
Hug
1 ReactionIf exercise helps you then adding Acetyl L Carnitine may help even further. Research shows this is helpful for peripheral neuropathy including from damage such as yours. This helps to bring more oxygen to the body during exercise.