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.
Hi, I am desperate. So I researched Palmitoylethanolamide (PEA) and articles lead me to believe it won't kill me 🙂
I took one of the two suggested pills. Nothing happened to me thus far...
Thanks. I'm sorry for your pain/numbness situation. Stef
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.
Hi, I am desperate. So I researched Palmitoylethanolamide (PEA) and articles lead me to believe it won't kill me 🙂
I took one of the two suggested pills. Nothing happened to me thus far...
Thanks. I'm sorry for your pain/numbness situation. Stef
Hi Stef. I too am desperate…it is definitely affecting my quality of life. Much of the time I can manage the pain but sometimes it’s too much. I did do dry needling for about a year but that wore off. Since the beginning if it’s too much I will eat a gummie. I keep them by my bedside for when I am woken up by it. It’s the best remedy I have found. Good luck with your search. Know that we are all understanding and want to find a cure!
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.
Hi John, Thanks for the information. I will look it up. @wolfie1, Hang in there. Whenever it is happening, know someone - many someones - are also feeling pain.
Thanks, Guys, Stef
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.
Try Nerve Control 911! It works for me! I’ve taken it for 3 years. I have PN diabetic. Pain was excruciating before I found this capsule. I take 2 a day. Also tried cyclobenzaprine & Pregabalin with no effect. I’ve shared this more than once on this website but have never seen it posted. ??? I’m only trying to share what works for me.
Try Nerve Control 911! It works for me! I’ve taken it for 3 years. I have PN diabetic. Pain was excruciating before I found this capsule. I take 2 a day. Also tried cyclobenzaprine & Pregabalin with no effect. I’ve shared this more than once on this website but have never seen it posted. ??? I’m only trying to share what works for me.
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.
Hello there,
I am new to this group but at 76 I tried to get out of bed one morning about six years ago and the bedroom ceuling literally was spinning round, I stood up lost my balance and fell back on the bed after few minutes I finally tried again and hanging onto the walls, kitchen tables etc.. I made it to the washroom and hanging on to the sink I found some relief all the while my head was spinning.
Later on that morning I decided to go get a coffee from a coffee shop and walking or actually staggering because my balance was way off I made it to the store a couple of blocks away drawing curious looks from passersbys who probably thought I was severely drunk first thing in the morning!
Later on that day I bought a cain and called my neurologist for an appointment.
She said after examining me and I quote "my mother has the same thing and if your balance or condition doesn't improve in two years you're stuck with it"?
I've had several ear and throat specialist doctors examine me and they all eliminated ear as cause of my imbalance, I am OK driving a car, watch TV, and short walks etc.. all activities that don't require extended walking otherwise I use a Cain and for longer walks I use a walker.
About a year and a half ago I finally got a new neurologist and after some tests she determined that the nerves in my feet do not connect to my brain (nerve deceise)
Hello there,
I am new to this group but at 76 I tried to get out of bed one morning about six years ago and the bedroom ceuling literally was spinning round, I stood up lost my balance and fell back on the bed after few minutes I finally tried again and hanging onto the walls, kitchen tables etc.. I made it to the washroom and hanging on to the sink I found some relief all the while my head was spinning.
Later on that morning I decided to go get a coffee from a coffee shop and walking or actually staggering because my balance was way off I made it to the store a couple of blocks away drawing curious looks from passersbys who probably thought I was severely drunk first thing in the morning!
Later on that day I bought a cain and called my neurologist for an appointment.
She said after examining me and I quote "my mother has the same thing and if your balance or condition doesn't improve in two years you're stuck with it"?
I've had several ear and throat specialist doctors examine me and they all eliminated ear as cause of my imbalance, I am OK driving a car, watch TV, and short walks etc.. all activities that don't require extended walking otherwise I use a Cain and for longer walks I use a walker.
About a year and a half ago I finally got a new neurologist and after some tests she determined that the nerves in my feet do not connect to my brain (nerve deceise)
Welcome @seadog, You are not alone with walking issues. Many of us struggle. I struggle some myself walking any sort of distance but haven't had the dizziness you mention. Being new to Connect you might want to scan through the many discussions in the Neuropathy Support Group to see if there are other discussions that might interest you. Here's a list of the discussions in the group - https://connect.mayoclinic.org/group/neuropathy/.
Did your neurologist provide a specific diagnosis for the type of neuropathy?
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.
To continue...
My new neurologist determined I have nerve problem (it is sick) and sent me to a RHEUMATOLOGY for an appointment.
Rheumatology specialist doctor after reading my test results said I have Neuropathy and they treat it here in this hospital with 70% success rate!
I was in 7th heaven, finally my imbalance problems may get treated!
I was prescribed infusion of IMMUNOGLOBULIN 80 mg twice a month since February 2024 with no noticible improvements in my balance so after a few months they taught me how to administer extra doses 20 mg per week at home.
Hospital send several boxes of medical supplies syringes a pump etc... and Vials of IMMUNOGLOBULIN to my home at no charge (thank you Canadian Health System).
Sadly 10 months into treatment I don't see any I mean ANY improvements in my condition my balance hasn't improved, the only thing that I noticed is the ringing in my ears has decreased in volume and sometimes it disappears completely.
I am going to continue with this infusion of IMMUNOGLOBULIN until February 2025 and the doctor will suggest other treatment if there is still no improvement.
Tomorrow November 12, 2024 I have an appointment with private medical clinic that offers physical therapy and other treatments for Neuropathy I will keep you posted if I will sign up I need to try some additional remedies this loss of balance has ruined my life and I am not willing to give up just yet, thank you for letting me venting sharing is also a form of therapy.
Seadog
Connect
Connect
Like
Helpful
Hug
Hi, I am desperate. So I researched Palmitoylethanolamide (PEA) and articles lead me to believe it won't kill me 🙂
I took one of the two suggested pills. Nothing happened to me thus far...
Thanks. I'm sorry for your pain/numbness situation. Stef
Hi Again, I don't know if I broke some rule mentioning PEA supplement. I'm new here. I am not a seller of this supplement in any way. Stef
Hi Stef, You didn't break any rules 🙂. There is actually a discussion on the PEA supplement.
-- Palmitoylethanolamide (PEA): Anyone had success?
https://connect.mayoclinic.org/discussion/pea-success/
If you do a search there are quite a few comments from members. Here's a list that you might want to look through - https://connect.mayoclinic.org/search/?search=PEA%20supplement.
Hi Stef. I too am desperate…it is definitely affecting my quality of life. Much of the time I can manage the pain but sometimes it’s too much. I did do dry needling for about a year but that wore off. Since the beginning if it’s too much I will eat a gummie. I keep them by my bedside for when I am woken up by it. It’s the best remedy I have found. Good luck with your search. Know that we are all understanding and want to find a cure!
-
Like -
Helpful -
Hug
1 ReactionHi John, Thanks for the information. I will look it up.
@wolfie1, Hang in there. Whenever it is happening, know someone - many someones - are also feeling pain.
Thanks, Guys, Stef
-
Like -
Helpful -
Hug
1 ReactionTry Nerve Control 911! It works for me! I’ve taken it for 3 years. I have PN diabetic. Pain was excruciating before I found this capsule. I take 2 a day. Also tried cyclobenzaprine & Pregabalin with no effect. I’ve shared this more than once on this website but have never seen it posted. ??? I’m only trying to share what works for me.
Hi @alicebrown, you can see all your comments in your profile https://connect.mayoclinic.org/member/00-2d7a2da4f28b1dde376435/activity/comments/
Find more tips about using Mayo Clinic Connect in the Help Center https://connect.mayoclinic.org/help-center/
-
Like -
Helpful -
Hug
3 ReactionsHello there,
I am new to this group but at 76 I tried to get out of bed one morning about six years ago and the bedroom ceuling literally was spinning round, I stood up lost my balance and fell back on the bed after few minutes I finally tried again and hanging onto the walls, kitchen tables etc.. I made it to the washroom and hanging on to the sink I found some relief all the while my head was spinning.
Later on that morning I decided to go get a coffee from a coffee shop and walking or actually staggering because my balance was way off I made it to the store a couple of blocks away drawing curious looks from passersbys who probably thought I was severely drunk first thing in the morning!
Later on that day I bought a cain and called my neurologist for an appointment.
She said after examining me and I quote "my mother has the same thing and if your balance or condition doesn't improve in two years you're stuck with it"?
I've had several ear and throat specialist doctors examine me and they all eliminated ear as cause of my imbalance, I am OK driving a car, watch TV, and short walks etc.. all activities that don't require extended walking otherwise I use a Cain and for longer walks I use a walker.
About a year and a half ago I finally got a new neurologist and after some tests she determined that the nerves in my feet do not connect to my brain (nerve deceise)
-
Like -
Helpful -
Hug
1 ReactionWelcome @seadog, You are not alone with walking issues. Many of us struggle. I struggle some myself walking any sort of distance but haven't had the dizziness you mention. Being new to Connect you might want to scan through the many discussions in the Neuropathy Support Group to see if there are other discussions that might interest you. Here's a list of the discussions in the group - https://connect.mayoclinic.org/group/neuropathy/.
Did your neurologist provide a specific diagnosis for the type of neuropathy?
To continue...
My new neurologist determined I have nerve problem (it is sick) and sent me to a RHEUMATOLOGY for an appointment.
Rheumatology specialist doctor after reading my test results said I have Neuropathy and they treat it here in this hospital with 70% success rate!
I was in 7th heaven, finally my imbalance problems may get treated!
I was prescribed infusion of IMMUNOGLOBULIN 80 mg twice a month since February 2024 with no noticible improvements in my balance so after a few months they taught me how to administer extra doses 20 mg per week at home.
Hospital send several boxes of medical supplies syringes a pump etc... and Vials of IMMUNOGLOBULIN to my home at no charge (thank you Canadian Health System).
Sadly 10 months into treatment I don't see any I mean ANY improvements in my condition my balance hasn't improved, the only thing that I noticed is the ringing in my ears has decreased in volume and sometimes it disappears completely.
I am going to continue with this infusion of IMMUNOGLOBULIN until February 2025 and the doctor will suggest other treatment if there is still no improvement.
Tomorrow November 12, 2024 I have an appointment with private medical clinic that offers physical therapy and other treatments for Neuropathy I will keep you posted if I will sign up I need to try some additional remedies this loss of balance has ruined my life and I am not willing to give up just yet, thank you for letting me venting sharing is also a form of therapy.
Seadog
-
Like -
Helpful -
Hug
1 Reaction