I have Sjogren's neuropathy with the only symptoms of loss of weight bearing balance. Hard as heck to diagnose. Two neurologist didn't have a clue. Took and experienced rheumatologist to recognise it. After I knew what it was, I went back to one of the neurologist for the IvIg therapy. I've had the first 5 days in a row and one day 3 weeks after (where they doubled my dose!) Will be doing 11 more treatments every 3 weeks. No effects yet. I will let you know.
My Neurologist tole me that the IVIG wouldn't reverse the neuropathy, but rather slow its progression. My dx is Progressive Sensory Motor Axonal Neuropathy. I too wasn't too sure that it was working until my insurance refused to continue covering it for my condition. Almost immediately, my symptoms worsened. So, it did work for me. Unfortunately, clinical studies have not been done on my specific condition so I can no longer receive the infusions.
I have the same thing small fiber neuropathy (autonomic neuropathy) and severe axonal sensorimotor polyneuropathy.
There is a great research neurologist out of the University of Boston that accepts patients. Dr. Anna Louise Outlander. She has done studies on this.Google her and her lectures are on you tube. She did two control groups. If you ever took anatomy and physiology in college you are taught nerves do not regenerate.
They just die no hope of regenerating. I have spoken to my doctors about this. Including my pain management doctor there is more and more research in thc and nerve regeneration.
Back to her study. She used over 3,000 people in both studies. One group had IVIG therapy with prednisone for over six months slowed the progression but not the nerve pain. Group two did medical marijuana. THC has been shown to provide nerve regeneration not sure how the process works (the mechanism of how the thc is currently being studied in nerve regeneration) but it was proven to help with pain and people had better sleep. It takes more than one dose of the IVIG to work. They are supposed to use the prednisone with it but not all neurologists follow that protocol. I took it as a child IVIG therapy. It helped build up my immune system as a child. I have asthma and ended up in the hospital several times every winter with pneumonia. IVIG really made a difference in my life. I live in Texas and 1% thc is a joke it is not strong enough and charge you a 100.00 a bottle. They prescribed over 500.00 dollars which isn’t covered by insurance. To me that’s highway robbery when you can get it in Oklahoma a lot cheaper. I do not know your age but I am over 60. My friends used to buy Acapulco gold 1 ounce for 100.00. Texas is crazy. No I never did it illegally growing up. I have tried it twice in Colorado got the best nights sleep in forever. Did not have the nerve pain. I actually ate the next morning instead of being in pain just pushing my food around. I do not eat when my pain gets too bad.
I have the same thing small fiber neuropathy (autonomic neuropathy) and severe axonal sensorimotor polyneuropathy.
There is a great research neurologist out of the University of Boston that accepts patients. Dr. Anna Louise Outlander. She has done studies on this.Google her and her lectures are on you tube. She did two control groups. If you ever took anatomy and physiology in college you are taught nerves do not regenerate.
They just die no hope of regenerating. I have spoken to my doctors about this. Including my pain management doctor there is more and more research in thc and nerve regeneration.
Back to her study. She used over 3,000 people in both studies. One group had IVIG therapy with prednisone for over six months slowed the progression but not the nerve pain. Group two did medical marijuana. THC has been shown to provide nerve regeneration not sure how the process works (the mechanism of how the thc is currently being studied in nerve regeneration) but it was proven to help with pain and people had better sleep. It takes more than one dose of the IVIG to work. They are supposed to use the prednisone with it but not all neurologists follow that protocol. I took it as a child IVIG therapy. It helped build up my immune system as a child. I have asthma and ended up in the hospital several times every winter with pneumonia. IVIG really made a difference in my life. I live in Texas and 1% thc is a joke it is not strong enough and charge you a 100.00 a bottle. They prescribed over 500.00 dollars which isn’t covered by insurance. To me that’s highway robbery when you can get it in Oklahoma a lot cheaper. I do not know your age but I am over 60. My friends used to buy Acapulco gold 1 ounce for 100.00. Texas is crazy. No I never did it illegally growing up. I have tried it twice in Colorado got the best nights sleep in forever. Did not have the nerve pain. I actually ate the next morning instead of being in pain just pushing my food around. I do not eat when my pain gets too bad.
Thanks for your detailed reply. You've done wayyyy more research than I. I'm just too worn out to dig deeply. The whole thing gets demoralizing although, generally, I'm an upbeat person. I go to a one hour exercise class 5 days a week. That has been the most substantial thing that addresses my cramps. Gabapentin also helps with sleep, 800 before bed. Keep me posted on ahay else you've tried and how you're doing.
My diagnosis is large fiber, axonal, peripheral neuropathy, autoimmune related. The autoimmune designation led my two neurologists, one consulting with the other, to recommend IVIG infusions of immunoglobulin monthly to clam residual inflammation. I have taken them monthly for over a year at a nearby remote site connected to the main hospital. I am given benedryl to ward off an allergic reaction.
Along with continuing PT, I see IVIG as contributing to greater leg strength and range of motion.
I have had no adverse side effects. I hope this helps.
I have IVig, not for neuropathy, for something else. It takes a while for it to effect/ work with regards to the neuropathy and everything else. I just have too much for the IVig to do ;).
I also do many things to combat my neuropathy.
My Neurologist tole me that the IVIG wouldn't reverse the neuropathy, but rather slow its progression. My dx is Progressive Sensory Motor Axonal Neuropathy. I too wasn't too sure that it was working until my insurance refused to continue covering it for my condition. Almost immediately, my symptoms worsened. So, it did work for me. Unfortunately, clinical studies have not been done on my specific condition so I can no longer receive the infusions.
Dr. Anna Louise Outlander
University of Boston is accepting new patients. She has done a study on it an if you understand medical lingo you can listen to her lectures on you tube. She did a study with over 3,000 people two groups. One using IVIG/Prednisone IV therapy the second medical marijuana. Yes IVIG is not a cure. I am a RN that went through school and now have a lot of problems with my type neuropathy. Okay let’s get back. In anatomy and physiology you are taught in school that nerves to NoT regenerate period. The second group in the medical marijuana did better and was pain free. They no not understand medically yet how the nerve regenerates occurs with thc. In her lecture it does not say what type medical marijuana she used. I would go see her and find out. Mine is autonomic neuropathy (small fiber) and severe axonal sensorimotor neuropathy along with peripheral neuropathy. Since I have the gastroparesis, kidney, heart (I go between Bradycardia/tachycardia) and bladder. Both legs have muscle atrophy along with balance problems. Texas does not have a medical marijuana program. At least 1% thc is a joke with each bottle costing over 100.00. I have tried it twice in Colorado.
I have IVig, not for neuropathy, for something else. It takes a while for it to effect/ work with regards to the neuropathy and everything else. I just have too much for the IVig to do ;).
I also do many things to combat my neuropathy.
What do you do to combat neuropathic pain at night? When my brain slows down all the pain comes full blast. I am very limited on what I can and cannot do. I have had four left hip replacements and actebulum fracture plus my right hip replacement. It was due to avascular necrosis and osteoporosis. I was in my early 30’s then. I can’t do stairs, bending over can dislocate them.
I do have a prescription compounded pain medication that has gabapentin, ketamine, baclofin, and a bunch of other things but very sticky but it works. I can’t take oral gabapentin allergic to it.
Thanks for your detailed reply. You've done wayyyy more research than I. I'm just too worn out to dig deeply. The whole thing gets demoralizing although, generally, I'm an upbeat person. I go to a one hour exercise class 5 days a week. That has been the most substantial thing that addresses my cramps. Gabapentin also helps with sleep, 800 before bed. Keep me posted on ahay else you've tried and how you're doing.
Yes , I am on magnesium and prescription potassium. My magnesium ran low last year for the first time. I started magnesium awhile back just had labs done. C Reactive protein and sed rate elevated plus ANA. Everything else was okay except for kidneys those were messed up creatine and some other ones. Been in renal failure for awhile. Since2021 thinning of the cortical lining of the kidneys.
I’ve been on IVIG Infusion therapy for two years. I’ve been diagnosed with immune mediated peripheral neuropathy. While I have not seen improvement in my symptoms, I’m hopeful it is slowing down the progress of my condition.
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I have Sjogren's neuropathy with the only symptoms of loss of weight bearing balance. Hard as heck to diagnose. Two neurologist didn't have a clue. Took and experienced rheumatologist to recognise it. After I knew what it was, I went back to one of the neurologist for the IvIg therapy. I've had the first 5 days in a row and one day 3 weeks after (where they doubled my dose!) Will be doing 11 more treatments every 3 weeks. No effects yet. I will let you know.
I have the same thing small fiber neuropathy (autonomic neuropathy) and severe axonal sensorimotor polyneuropathy.
There is a great research neurologist out of the University of Boston that accepts patients. Dr. Anna Louise Outlander. She has done studies on this.Google her and her lectures are on you tube. She did two control groups. If you ever took anatomy and physiology in college you are taught nerves do not regenerate.
They just die no hope of regenerating. I have spoken to my doctors about this. Including my pain management doctor there is more and more research in thc and nerve regeneration.
Back to her study. She used over 3,000 people in both studies. One group had IVIG therapy with prednisone for over six months slowed the progression but not the nerve pain. Group two did medical marijuana. THC has been shown to provide nerve regeneration not sure how the process works (the mechanism of how the thc is currently being studied in nerve regeneration) but it was proven to help with pain and people had better sleep. It takes more than one dose of the IVIG to work. They are supposed to use the prednisone with it but not all neurologists follow that protocol. I took it as a child IVIG therapy. It helped build up my immune system as a child. I have asthma and ended up in the hospital several times every winter with pneumonia. IVIG really made a difference in my life. I live in Texas and 1% thc is a joke it is not strong enough and charge you a 100.00 a bottle. They prescribed over 500.00 dollars which isn’t covered by insurance. To me that’s highway robbery when you can get it in Oklahoma a lot cheaper. I do not know your age but I am over 60. My friends used to buy Acapulco gold 1 ounce for 100.00. Texas is crazy. No I never did it illegally growing up. I have tried it twice in Colorado got the best nights sleep in forever. Did not have the nerve pain. I actually ate the next morning instead of being in pain just pushing my food around. I do not eat when my pain gets too bad.
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2 ReactionsThanks for your detailed reply. You've done wayyyy more research than I. I'm just too worn out to dig deeply. The whole thing gets demoralizing although, generally, I'm an upbeat person. I go to a one hour exercise class 5 days a week. That has been the most substantial thing that addresses my cramps. Gabapentin also helps with sleep, 800 before bed. Keep me posted on ahay else you've tried and how you're doing.
My diagnosis is large fiber, axonal, peripheral neuropathy, autoimmune related. The autoimmune designation led my two neurologists, one consulting with the other, to recommend IVIG infusions of immunoglobulin monthly to clam residual inflammation. I have taken them monthly for over a year at a nearby remote site connected to the main hospital. I am given benedryl to ward off an allergic reaction.
Along with continuing PT, I see IVIG as contributing to greater leg strength and range of motion.
I have had no adverse side effects. I hope this helps.
-
Like -
Helpful -
Hug
2 ReactionsI have IVig, not for neuropathy, for something else. It takes a while for it to effect/ work with regards to the neuropathy and everything else. I just have too much for the IVig to do ;).
I also do many things to combat my neuropathy.
-
Like -
Helpful -
Hug
1 ReactionDr. Anna Louise Outlander
University of Boston is accepting new patients. She has done a study on it an if you understand medical lingo you can listen to her lectures on you tube. She did a study with over 3,000 people two groups. One using IVIG/Prednisone IV therapy the second medical marijuana. Yes IVIG is not a cure. I am a RN that went through school and now have a lot of problems with my type neuropathy. Okay let’s get back. In anatomy and physiology you are taught in school that nerves to NoT regenerate period. The second group in the medical marijuana did better and was pain free. They no not understand medically yet how the nerve regenerates occurs with thc. In her lecture it does not say what type medical marijuana she used. I would go see her and find out. Mine is autonomic neuropathy (small fiber) and severe axonal sensorimotor neuropathy along with peripheral neuropathy. Since I have the gastroparesis, kidney, heart (I go between Bradycardia/tachycardia) and bladder. Both legs have muscle atrophy along with balance problems. Texas does not have a medical marijuana program. At least 1% thc is a joke with each bottle costing over 100.00. I have tried it twice in Colorado.
-
Like -
Helpful -
Hug
1 ReactionWhat do you do to combat neuropathic pain at night? When my brain slows down all the pain comes full blast. I am very limited on what I can and cannot do. I have had four left hip replacements and actebulum fracture plus my right hip replacement. It was due to avascular necrosis and osteoporosis. I was in my early 30’s then. I can’t do stairs, bending over can dislocate them.
I do have a prescription compounded pain medication that has gabapentin, ketamine, baclofin, and a bunch of other things but very sticky but it works. I can’t take oral gabapentin allergic to it.
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Helpful -
Hug
1 ReactionJust wondering — have you tried a magnesium supplement for your leg cramps?
Yes , I am on magnesium and prescription potassium. My magnesium ran low last year for the first time. I started magnesium awhile back just had labs done. C Reactive protein and sed rate elevated plus ANA. Everything else was okay except for kidneys those were messed up creatine and some other ones. Been in renal failure for awhile. Since2021 thinning of the cortical lining of the kidneys.
-
Like -
Helpful -
Hug
1 ReactionI’ve been on IVIG Infusion therapy for two years. I’ve been diagnosed with immune mediated peripheral neuropathy. While I have not seen improvement in my symptoms, I’m hopeful it is slowing down the progress of my condition.
-
Like -
Helpful -
Hug
4 Reactions