Neuropathy has a wide spectrum, and in my experience, neurologists are the doctors best equipped to diagnose and possibly offer treatment. My Rhode Island neurologist, teaching at Brown University sought a second opinion from her neurologist colleague at Massachusetts General in Boston. They both settled on an autoimmune cause for my neuropathy, based on a number of blood tests, EMG’s, a spinal tap, and a nerve biopsy. I had to be willing to go through those tests and okay their recommendation for iVIG infusions to reduce nerve inflammation. It has also reduced pain, and added to range of motion and strength. There is support here, and support groups through the Foundation for Peripheral Neuropathy, and the Western Neuropathy Association. So, you do not have to be alone in this struggle. That has helped me, and I hope it will help you.
Thank you for the encouraging words that is so beautiful to hear, but if I may ask a question what kind of infusion did you have? I guess I am asking what did it consist of if you don’t mind sharing.
Thank you for the encouraging words that is so beautiful to hear, but if I may ask a question what kind of infusion did you have? I guess I am asking what did it consist of if you don’t mind sharing.
I had an immunoglobulin infusion, based on my weight. The infusions are for 5 days, 3 hours a day, once a month. They are preceded by a 10 minute Benadryl IV, to block any allergic reaction. That makes me sleep for the first hour. Basically painless throughout.
I hope this helps.
I had an immunoglobulin infusion, based on my weight. The infusions are for 5 days, 3 hours a day, once a month. They are preceded by a 10 minute Benadryl IV, to block any allergic reaction. That makes me sleep for the first hour. Basically painless throughout.
I hope this helps.
I am non-diabetic and have PN. About 6 yrs ago I was diagnosed. It is progressive and primarily affects my feet and starting in my hands. Very painful at times but I can still walk without a walker. I am a 72 year old man who still appreciates life very much.
Hi @hankinbc, Welcome to Connect. I also have idiopathic small fiber peripheral neuropathy and do not have diabetes although I have been pre-diabetic for many years. You might find the following discussion helpful:
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/.
Are you on any pain medications for your neuropathy or do you only have numbness?
Hi @hankinbc, Welcome to Connect. I also have idiopathic small fiber peripheral neuropathy and do not have diabetes although I have been pre-diabetic for many years. You might find the following discussion helpful:
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/.
Are you on any pain medications for your neuropathy or do you only have numbness?
I am non diabetic and have Idiopathic Chronic Axonal Polyneuropathy. I am currently using Medical Marijuana capsules and Tylenol Arthritis for nerve pain. Am very leery of staring Cymbalta, Tramadol, Neurontin, or Lyrica due to side effects as very sensitive to medications.
I am non diabetic and have Idiopathic Chronic Axonal Polyneuropathy. I am currently using Medical Marijuana capsules and Tylenol Arthritis for nerve pain. Am very leery of staring Cymbalta, Tramadol, Neurontin, or Lyrica due to side effects as very sensitive to medications.
@luvpsu10, I know you're not alone with your feeling about starting new medications when it comes to possible side effects. I'm not sure if you've seen this discussion started by @laurask who may have some thoughts or experience to share with you.
-- Axonal Sensorimotor Polyneuropathy: Looking for someone to relate: https://connect.mayoclinic.org/discussion/someone-to-relate/
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Thank you for the encouraging words that is so beautiful to hear, but if I may ask a question what kind of infusion did you have? I guess I am asking what did it consist of if you don’t mind sharing.
I had an immunoglobulin infusion, based on my weight. The infusions are for 5 days, 3 hours a day, once a month. They are preceded by a 10 minute Benadryl IV, to block any allergic reaction. That makes me sleep for the first hour. Basically painless throughout.
I hope this helps.
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4 ReactionsThank you and yes it was very helpful. Have a beautiful and blessed day.
I’m glad. I wish you the same for your day!
I am non-diabetic and have PN. About 6 yrs ago I was diagnosed. It is progressive and primarily affects my feet and starting in my hands. Very painful at times but I can still walk without a walker. I am a 72 year old man who still appreciates life very much.
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1 ReactionI was diagnosed using leg biopsies with small fiber idiopathic neuropathy and do not have diabetes.
Hi @hankinbc, Welcome to Connect. I also have idiopathic small fiber peripheral neuropathy and do not have diabetes although I have been pre-diabetic for many years. You might find the following discussion helpful:
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/.
Are you on any pain medications for your neuropathy or do you only have numbness?
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2 ReactionsI have been reading about LED treatment. Anyone know of case studies about this treatment? I would like to be involved.
I am non diabetic and have Idiopathic Chronic Axonal Polyneuropathy. I am currently using Medical Marijuana capsules and Tylenol Arthritis for nerve pain. Am very leery of staring Cymbalta, Tramadol, Neurontin, or Lyrica due to side effects as very sensitive to medications.
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3 Reactions@luvpsu10, I know you're not alone with your feeling about starting new medications when it comes to possible side effects. I'm not sure if you've seen this discussion started by @laurask who may have some thoughts or experience to share with you.
-- Axonal Sensorimotor Polyneuropathy: Looking for someone to relate: https://connect.mayoclinic.org/discussion/someone-to-relate/
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Helpful -
Hug
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