I also had the spinal stimulator implanted in December of ‘22. The change isn’t that dramatic but we are still playing with adjustments. I do get discouraged though…guess I’m hoping for a miracle cure. Have you tried NeuroPure? I’m waiting on the package to arrive. I will try anything to get my life back.
I also had the spinal stimulator implanted in December of ‘22. The change isn’t that dramatic but we are still playing with adjustments. I do get discouraged though…guess I’m hoping for a miracle cure. Have you tried NeuroPure? I’m waiting on the package to arrive. I will try anything to get my life back.
I have neuropathy on my head which no doctors know how to deal with it . They try to deal with it like a migraine which it is not. I have seen so many doctors one said try everything. I am now on 3 different meds something is starting to work. I can hardly stay awake during the day and I am dizzy. You have to keep going no matter what. Some people have it a lot worse than me. So I try not to complain.
I am very new to Mayo and this conversation but I am surprised to read this. I have trigeminal-mandibular neuropathy and occipital neuralgia (interchangeable with neuropathy depending on who is talking). I have been treated for migraines for years and my pain dr made the diagnosis change after a detailed visit last year. I have received several occipital nerve blocks, lasting about 6-10 weeks each and cut back on migraine meds.
My first visit at Mayo-Jacksonville was April 5, specifically for my facial pain, but my appointment was with Dr Fermo, a Neurologist, that specializes in Botox treatment for head neuropathy.
It might be worth a phone call, visit or virtual visit.
Hope you find help.
I have MGUS and few years ago I started having neuropathy in my feet then the nerve problem is now over my entire body. I am not telling anyone what to do. I couldn’t get any pain pills for the problem so I took a chance and tried using marijuana and it seems to help. I also take 800 mg three times a day of gabapentin. I don’t know if it works or not. I am in my late 70’s and have these health problems. Every other day or so I have nerve attacks over my entire body that will last all day. I wish you well and hope you get better.
I have MGUS and few years ago I started having neuropathy in my feet then the nerve problem is now over my entire body. I am not telling anyone what to do. I couldn’t get any pain pills for the problem so I took a chance and tried using marijuana and it seems to help. I also take 800 mg three times a day of gabapentin. I don’t know if it works or not. I am in my late 70’s and have these health problems. Every other day or so I have nerve attacks over my entire body that will last all day. I wish you well and hope you get better.
I have asked my MGUS doctor and he said he can’t help me with my neuropathy or nerve problems and I have been to several neurologist doctors and same answer and I might ad been to several pain doctors and no help. So far I have not found any other treatments.
I have asked my MGUS doctor and he said he can’t help me with my neuropathy or nerve problems and I have been to several neurologist doctors and same answer and I might ad been to several pain doctors and no help. So far I have not found any other treatments.
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I’ve not heard of it but will check it out. Thanks!
i have tryed it no help for me good luck but it keeps getting little worse all the time.
I have non diabetic neuropathy from cerebellar ataxia. Gabapentin helps some
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3 ReactionsI am very new to Mayo and this conversation but I am surprised to read this. I have trigeminal-mandibular neuropathy and occipital neuralgia (interchangeable with neuropathy depending on who is talking). I have been treated for migraines for years and my pain dr made the diagnosis change after a detailed visit last year. I have received several occipital nerve blocks, lasting about 6-10 weeks each and cut back on migraine meds.
My first visit at Mayo-Jacksonville was April 5, specifically for my facial pain, but my appointment was with Dr Fermo, a Neurologist, that specializes in Botox treatment for head neuropathy.
It might be worth a phone call, visit or virtual visit.
Hope you find help.
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2 Reactions@mvanstem
Is your ataxia occasional or constant? Would you mind sharing your ataxia symptoms?
Thank you,
Jake
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2 ReactionsAtaxia gait, lousy balance, nystagmus,occasional vertigo
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1 ReactionI have MGUS and few years ago I started having neuropathy in my feet then the nerve problem is now over my entire body. I am not telling anyone what to do. I couldn’t get any pain pills for the problem so I took a chance and tried using marijuana and it seems to help. I also take 800 mg three times a day of gabapentin. I don’t know if it works or not. I am in my late 70’s and have these health problems. Every other day or so I have nerve attacks over my entire body that will last all day. I wish you well and hope you get better.
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2 ReactionsWelcome @luckyride, Thanks for sharing what helps you. Since you mentioned MGUS, I thought you might also find the following discussion helpful:
--- Does anyone have neuropathy related to MGUS?: https://connect.mayoclinic.org/discussion/mgus-neuropathy/.
Have you tried any other complementary or alternative treatments to see if they help with the neuropathy and nerve problems?
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1 ReactionI have asked my MGUS doctor and he said he can’t help me with my neuropathy or nerve problems and I have been to several neurologist doctors and same answer and I might ad been to several pain doctors and no help. So far I have not found any other treatments.
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2 ReactionsThe Foundation for Peripheral Neuropathy has a list of complementary and alternative treatments you might find helpful here - https://www.foundationforpn.org/living-well/complementary-therapies/.
Also, there are some other neuropathy discussions you might find helpful:
--- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
--- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
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