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Has anyone had IVIG Infusions for Neuropathy?
Neuropathy | Last Active: May 29 7:12pm | Replies (422)Comment receiving replies
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.
Replies to "My Neurologist tole me that the IVIG wouldn't reverse the neuropathy, but rather slow its progression...."
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.
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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.