Ask your doctor about IVIG. There is a double blind study which I think is still recruiting which is set to prove whether IVIG can reduce/eliminate symptoms in people with SFN. It is expensive and hard to get coverage under most insurances. I have idiopathic short, long, motor and autonomic nerve neuropathy and IVIG has helped to eliminate some symptoms, slow progress on others. Worth a look as it is the best drug out there that reduces/eliminates symptoms rather than masking them.
I have Diabetic Neuropathy, and the pain in my legsAREte bad, has ANYONE FOUND A GOOD TREATMENT FOR IT, right NOW i TAKE pRGABLIN, i USED TO TAKE lYRICA BUT THE insurance company HAD ME TAKE THE generic. iNSPIRED 123
I have Diabetic Neuropathy, and the pain in my legsAREte bad, has ANYONE FOUND A GOOD TREATMENT FOR IT, right NOW i TAKE pRGABLIN, i USED TO TAKE lYRICA BUT THE insurance company HAD ME TAKE THE generic. iNSPIRED 123
Have you researched the generic? I've had the same experience with Medicare switching to generics to get it cheaper. I tried Lyrica, but the side effects put me in the hospital for a few days. I wish I could have continued taking it because it was helping my neuropathy pain.
I had a Burst DR spinal cord stimulator implant in June of 2017, and it made a major improvement in my foot pain. Maybe that's something you can consider.
I have non-diabetic, non-chemo p.n. I take gabapentin, sleep in socks, and experience severe pain, burning, and tingling. I have found some relief from CBD cream but frankly find that Frankincense oil works equally well and is cheaper. I also use M.O.M.E.D. Neuropathy Release cream purchased along with Frankincense through Amazon. There are times when frankly nothing helps and I am hoping for new ideas.
I have non diabetic peripheral neuropathy that recently my neurologist said it was caused by my consuming over a large period of time Vitamin B-6. I took these in Vitamin packs 10 mg daily over 14 years.
I have non diabetic peripheral neuropathy that recently my neurologist said it was caused by my consuming over a large period of time Vitamin B-6. I took these in Vitamin packs 10 mg daily over 14 years.
Hello @stanleyw, Welcome to Mayo Clinic Connect. Thank you for sharing your experience with peripheral neuropathy. There is a lot of evidence about vitamin B6 toxicity and causing peripheral neuropathy. Do you have pain with your neuropathy?
I have a question for you and anyone else who would like to comment on this problem. Besides having been diagnosed with Central Sensitization Syndrome and permanent nerve damage from an operation which has also resulted in peripheral nerve damage to both my feet, I have repeatedly asked my few doctors that are still trying to help me this question, “ what if something else medically goes wrong with me and it will just because of Mother Nature and my age, how the hell are you going help me now”, ? I am chemically sensitive to all pharmaceutical drugs and a lot of foods and natural medications. I wasn’t before that operation and as I have run through my medical history, other than having been born with thyroid disease, doctors and their screw ups have caused my present situation. My primary doctor just stares at me and shakes his head and told me we will see. The gastroenterologist that I have video conversations with and I email, told me we will figure out that problem when the time comes. The neurologist that is helping me deal with my pain has no answer for me either. They all feel sorry for me and I appreciate the sentiment but that is not going to help me. I think it is a reasonable question and deserves an answer other than we will see. I deal with reality not with we will see. That is just dumb. Since I have seen so many doctors since that operation and they have been clueless as to what was happening to me all along, and treated me with a pain killer that nearly killed me, and the doctors I have now know my history about what happened, you would think they would go out of their way in this case and come up with something substantial. But they haven’t. I have racked my brain on trying to deal with this but I can’t come up with anything either. So I am open for any reasonable suggestions.
I have a question for you and anyone else who would like to comment on this problem. Besides having been diagnosed with Central Sensitization Syndrome and permanent nerve damage from an operation which has also resulted in peripheral nerve damage to both my feet, I have repeatedly asked my few doctors that are still trying to help me this question, “ what if something else medically goes wrong with me and it will just because of Mother Nature and my age, how the hell are you going help me now”, ? I am chemically sensitive to all pharmaceutical drugs and a lot of foods and natural medications. I wasn’t before that operation and as I have run through my medical history, other than having been born with thyroid disease, doctors and their screw ups have caused my present situation. My primary doctor just stares at me and shakes his head and told me we will see. The gastroenterologist that I have video conversations with and I email, told me we will figure out that problem when the time comes. The neurologist that is helping me deal with my pain has no answer for me either. They all feel sorry for me and I appreciate the sentiment but that is not going to help me. I think it is a reasonable question and deserves an answer other than we will see. I deal with reality not with we will see. That is just dumb. Since I have seen so many doctors since that operation and they have been clueless as to what was happening to me all along, and treated me with a pain killer that nearly killed me, and the doctors I have now know my history about what happened, you would think they would go out of their way in this case and come up with something substantial. But they haven’t. I have racked my brain on trying to deal with this but I can’t come up with anything either. So I am open for any reasonable suggestions.
One thing that I might do is to try to boost my immune system naturally with daily bone broth powder in orange juice, eat natural foods with probiotics, like sauerkraut, kimchee, kefir. Research boosting your immunity so that when a time comes that you need a new med, maybe your body will be less sensitive, and able to stand it. I would also consider Low Dose Naltrexone, which is supposed to be great for boosting immunity and helping with pain. I am on it now, and it does help with pain. Not great, but it helps. Good luck, Lori Renee
My neurologist has been a great help to me, and so has my pain doctor. They respect each other and have consukted on my case, which involves CIDP and major back problems.
My neurologist has been a great help to me, and so has my pain doctor. They respect each other and have consukted on my case, which involves CIDP and major back problems.
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Ask your doctor about IVIG. There is a double blind study which I think is still recruiting which is set to prove whether IVIG can reduce/eliminate symptoms in people with SFN. It is expensive and hard to get coverage under most insurances. I have idiopathic short, long, motor and autonomic nerve neuropathy and IVIG has helped to eliminate some symptoms, slow progress on others. Worth a look as it is the best drug out there that reduces/eliminates symptoms rather than masking them.
I have Diabetic Neuropathy, and the pain in my legsAREte bad, has ANYONE FOUND A GOOD TREATMENT FOR IT, right NOW i TAKE pRGABLIN, i USED TO TAKE lYRICA BUT THE insurance company HAD ME TAKE THE generic. iNSPIRED 123
@inspired123
Have you researched the generic? I've had the same experience with Medicare switching to generics to get it cheaper. I tried Lyrica, but the side effects put me in the hospital for a few days. I wish I could have continued taking it because it was helping my neuropathy pain.
I had a Burst DR spinal cord stimulator implant in June of 2017, and it made a major improvement in my foot pain. Maybe that's something you can consider.
Jim
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2 ReactionsI use frankincense and myrh on my hubby legs and feet.
His is genetic.
Barely able to still walk.
He take1800 mg gabapentin a day
I have non diabetic peripheral neuropathy that recently my neurologist said it was caused by my consuming over a large period of time Vitamin B-6. I took these in Vitamin packs 10 mg daily over 14 years.
Hello @stanleyw, Welcome to Mayo Clinic Connect. Thank you for sharing your experience with peripheral neuropathy. There is a lot of evidence about vitamin B6 toxicity and causing peripheral neuropathy. Do you have pain with your neuropathy?
The National Institutes of Health has a good informational page on B6 here:
-- https://ods.od.nih.gov/factsheets/VitaminB6-Consumer/
I have a question for you and anyone else who would like to comment on this problem. Besides having been diagnosed with Central Sensitization Syndrome and permanent nerve damage from an operation which has also resulted in peripheral nerve damage to both my feet, I have repeatedly asked my few doctors that are still trying to help me this question, “ what if something else medically goes wrong with me and it will just because of Mother Nature and my age, how the hell are you going help me now”, ? I am chemically sensitive to all pharmaceutical drugs and a lot of foods and natural medications. I wasn’t before that operation and as I have run through my medical history, other than having been born with thyroid disease, doctors and their screw ups have caused my present situation. My primary doctor just stares at me and shakes his head and told me we will see. The gastroenterologist that I have video conversations with and I email, told me we will figure out that problem when the time comes. The neurologist that is helping me deal with my pain has no answer for me either. They all feel sorry for me and I appreciate the sentiment but that is not going to help me. I think it is a reasonable question and deserves an answer other than we will see. I deal with reality not with we will see. That is just dumb. Since I have seen so many doctors since that operation and they have been clueless as to what was happening to me all along, and treated me with a pain killer that nearly killed me, and the doctors I have now know my history about what happened, you would think they would go out of their way in this case and come up with something substantial. But they haven’t. I have racked my brain on trying to deal with this but I can’t come up with anything either. So I am open for any reasonable suggestions.
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1 ReactionOne thing that I might do is to try to boost my immune system naturally with daily bone broth powder in orange juice, eat natural foods with probiotics, like sauerkraut, kimchee, kefir. Research boosting your immunity so that when a time comes that you need a new med, maybe your body will be less sensitive, and able to stand it. I would also consider Low Dose Naltrexone, which is supposed to be great for boosting immunity and helping with pain. I am on it now, and it does help with pain. Not great, but it helps. Good luck, Lori Renee
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Like -
Helpful -
Hug
2 ReactionsMy neurologist has been a great help to me, and so has my pain doctor. They respect each other and have consukted on my case, which involves CIDP and major back problems.
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Hug
2 ReactionsEvery patient benefits from this.
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