Honestly, I’m 77. My brain still feels and works like I’m 30. However my body feels more like 100. I walk with a cane. I have poor balance. The neuropathy started when I was 63. Now the neuropathy is severe from my hips to my toes. Nerve conduction tests revealed that every nerve in my body is inflammed. Although, no damage. Next step was as spinal tap. Came back negative. Next step lidocaine infusion. 4 weeks in a row. Four hrs each weekly visit. Now 15 years later I can’t exercise at all. Can’t walk or bike ride. Everything out there is a scam. I have a very good Dr and prescription regimen daily. So I have a functional life during the day. But suffer more at night. Then it’s ice pack time.
I'm 79. I have idiopathic large-fiber PN, so no pain but terrible balance. The invisible onset of my PN was 10-12 years ago, but I wasn't given an "official" diagnosis until August 2022. That's when I started reading up on PN. That's also when I began to be bombarded with scam come-ons. Fortunately, I managed to duck the come-ons. An honest, caring neurologist and on-and-off PT have kept my PN at bay––plus a sepsis infection, which put me in conversation with a new team of specialists (infectious disease), instilling in me the value of good nutrition. I can still hear those specialists saying, 'Protein, protein, protein!' 🙂
I wish you the very best of the New Year!
Ray (@ray666)
I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.
I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.
Any neurofeedback already offered as of now is most likely charlatanry and not built on scientific ground. It's easy for psychiatrists and neurologists to make some easy money.
Any neurofeedback already offered as of now is most likely charlatanry and not built on scientific ground. It's easy for psychiatrists and neurologists to make some easy money.
It depends on everyone's situation..I was diagnosed with SFN three years ago which aggravated to the point of having difficulty walking...Finally I found a clinic offering Sanexas treatment and after three month along with some other life changes- I'm healed 70%...
Now I'm looking for a devise as a maintenance only.
Honestly, I’m 77. My brain still feels and works like I’m 30. However my body feels more like 100. I walk with a cane. I have poor balance. The neuropathy started when I was 63. Now the neuropathy is severe from my hips to my toes. Nerve conduction tests revealed that every nerve in my body is inflammed. Although, no damage. Next step was as spinal tap. Came back negative. Next step lidocaine infusion. 4 weeks in a row. Four hrs each weekly visit. Now 15 years later I can’t exercise at all. Can’t walk or bike ride. Everything out there is a scam. I have a very good Dr and prescription regimen daily. So I have a functional life during the day. But suffer more at night. Then it’s ice pack time.
I’m in the same situation as you.
My neuropathy started when I was 60, which was 12 yrs ago.
My balance is awful, can’t walk without a cane or walker, and I need a wheelchair because I can’t walk long distances anywhere.
I can’t even find shoes that are comfortable to walk in,as they hurt daily.
Some days I’m at my wits end with the pain, and I take Tramadol 2 tabs daily along with Ibuprofen for pain relief.
None of the many neurologists that I’ve had over the years, has helped me.
I’ve also been on Gabapentin 2400 mg daily for few years, and it did not work for my pain and numbness.
Also have been on many of the routine neuropathic drugs over the years, with no relief from them either.
I’m in the same situation as you.
My neuropathy started when I was 60, which was 12 yrs ago.
My balance is awful, can’t walk without a cane or walker, and I need a wheelchair because I can’t walk long distances anywhere.
I can’t even find shoes that are comfortable to walk in,as they hurt daily.
Some days I’m at my wits end with the pain, and I take Tramadol 2 tabs daily along with Ibuprofen for pain relief.
None of the many neurologists that I’ve had over the years, has helped me.
I’ve also been on Gabapentin 2400 mg daily for few years, and it did not work for my pain and numbness.
Also have been on many of the routine neuropathic drugs over the years, with no relief from them either.
I'm 79. I have idiopathic large-fiber PN, so no pain but terrible balance. The invisible onset of my PN was 10-12 years ago, but I wasn't given an "official" diagnosis until August 2022. That's when I started reading up on PN. That's also when I began to be bombarded with scam come-ons. Fortunately, I managed to duck the come-ons. An honest, caring neurologist and on-and-off PT have kept my PN at bay––plus a sepsis infection, which put me in conversation with a new team of specialists (infectious disease), instilling in me the value of good nutrition. I can still hear those specialists saying, 'Protein, protein, protein!' 🙂
I wish you the very best of the New Year!
Ray (@ray666)
I drink a high protein shake each morning with my Dr Mercola’s multivitamin.
Nothing works and that was my prognosis 6 yrs ago…that nothing works
-Rich
I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.
@sh0rtie I have been on the same quest like the rest of you. When you talk to the doctor, they just up front tell you there is nothing that can be done. I can't stand that numb feeling that creeps up and down my legs and feet at will SO this is what I have done and I have to say it has helped a little. First, I bought myself some reflexology shoes ( I call them torture shoes) from Amazon. I wear them with socks for 30 minutes a day in the morning. Then I bought some barefoot shoes to wear in the house because it hurts my ankles to go without shoes these days. Both seem to help if I do it regularly. I also have a pair of the muscle massage shoes that I got from Amazon. I do that about 3 times a week. My primary care doctor told me his wife has neuropathy and takes Alpha Lipoic Acid. I got some and take 600 mg every day. I can honestly say what has given me the most help is the Alpha Lipoic Acid. I don't feel it creeping up my legs anymore. Sometimes I almost think I have some feeling in a couple of toes. I don't have ongoing pain but at night I am fighting the itching in my toes. It is hard to sleep. I wish I had better news but I am excited to have found a little relief. Laura Henderson
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Hi, rich12019 (@rich12019)
I'm 79. I have idiopathic large-fiber PN, so no pain but terrible balance. The invisible onset of my PN was 10-12 years ago, but I wasn't given an "official" diagnosis until August 2022. That's when I started reading up on PN. That's also when I began to be bombarded with scam come-ons. Fortunately, I managed to duck the come-ons. An honest, caring neurologist and on-and-off PT have kept my PN at bay––plus a sepsis infection, which put me in conversation with a new team of specialists (infectious disease), instilling in me the value of good nutrition. I can still hear those specialists saying, 'Protein, protein, protein!' 🙂
I wish you the very best of the New Year!
Ray (@ray666)
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6 ReactionsDid anyone here tried ReBuilders devise for neuropathy?
Them site shows good testimonials...
https://rebuildermedical.com/
Here are member discussions and comments on the Rebuilder - https://connect.mayoclinic.org/search/?search=rebuilder
Any neurofeedback already offered as of now is most likely charlatanry and not built on scientific ground. It's easy for psychiatrists and neurologists to make some easy money.
It depends on everyone's situation..I was diagnosed with SFN three years ago which aggravated to the point of having difficulty walking...Finally I found a clinic offering Sanexas treatment and after three month along with some other life changes- I'm healed 70%...
Now I'm looking for a devise as a maintenance only.
-
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Helpful -
Hug
1 ReactionI’m in the same situation as you.
My neuropathy started when I was 60, which was 12 yrs ago.
My balance is awful, can’t walk without a cane or walker, and I need a wheelchair because I can’t walk long distances anywhere.
I can’t even find shoes that are comfortable to walk in,as they hurt daily.
Some days I’m at my wits end with the pain, and I take Tramadol 2 tabs daily along with Ibuprofen for pain relief.
None of the many neurologists that I’ve had over the years, has helped me.
I’ve also been on Gabapentin 2400 mg daily for few years, and it did not work for my pain and numbness.
Also have been on many of the routine neuropathic drugs over the years, with no relief from them either.
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1 ReactionBeware of scams, usually by chiropractors that charge you upfront over $8,000 for treatment that made my pain worse.
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2 ReactionsI drink a high protein shake each morning with my Dr Mercola’s multivitamin.
Nothing works and that was my prognosis 6 yrs ago…that nothing works
-Rich
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1 ReactionAll I can say is good luck with that. Save your money
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1 Reaction@sh0rtie I have been on the same quest like the rest of you. When you talk to the doctor, they just up front tell you there is nothing that can be done. I can't stand that numb feeling that creeps up and down my legs and feet at will SO this is what I have done and I have to say it has helped a little. First, I bought myself some reflexology shoes ( I call them torture shoes) from Amazon. I wear them with socks for 30 minutes a day in the morning. Then I bought some barefoot shoes to wear in the house because it hurts my ankles to go without shoes these days. Both seem to help if I do it regularly. I also have a pair of the muscle massage shoes that I got from Amazon. I do that about 3 times a week. My primary care doctor told me his wife has neuropathy and takes Alpha Lipoic Acid. I got some and take 600 mg every day. I can honestly say what has given me the most help is the Alpha Lipoic Acid. I don't feel it creeping up my legs anymore. Sometimes I almost think I have some feeling in a couple of toes. I don't have ongoing pain but at night I am fighting the itching in my toes. It is hard to sleep. I wish I had better news but I am excited to have found a little relief. Laura Henderson
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Like -
Helpful -
Hug
2 Reactions