I just read through some of the suggestions on the previous thread. You will see that what worked for one patient was oxcarbazepine, which is a seizure medicine. The itch is most likely neurological (I’m not diagnosing) which is why topical creams don’t work. A seizure med would help. If you are on Gabapentin, you might ask about switching to oxcarbazepine, or another, which is my miracle drug, carbamazepine (Tegretol). I recently started having itching deep in my breast, and had a flashback to 20 years ago, when I had numerous scans for breast itching ( it drove me crazy). I also had scalp itching, and tried every shampoo out there. I know now that I was suffering from SFN and these were symptoms.
Hello I'm on duloxetine so you think I should change and it will work for the itching it's a nightmare all over my body and scalp and my eyes are also very dry,thanks alot 😊xxx
I work with a Provider in Great Falls MT. I sent a referral for our patient PK. He has tremors. I recieved a call from a Jess and that person called from a total different area code, wanting to know where the referral needed to go. I believe with tremors that should be Neurology. I will upload the referral and notes to this site.
I take 600 mg of gabapentin 4 times a day and pregabalin 100 mg morning and night!
I have had peripheral neuropathy for quite a number of years. It is related to my 3 spinal surgeries and Degenerative Disc Disease. JJ
Hello @user_ch98d0b5c -- I read from your earlier post that you do not know what the cause is for your peripheral neuropathy. I also have idiopathic small fiber peripheral neuropathy. They suspect hereditary but don't know. You also mentioned you have an upcoming appointment at John Hopkins with Dr. Hoke in September. I know it must be frustrating waiting and wanting some answers.
@user_ch98d0b5c have you found anything that helps with the pain?
I've found that I always wear socks, even at night. I mainly do this because I can't tell if my feet have been injured when I step on something walking around the house. I've found that socks made with bamboo fiber are really soft, stretchy and very easy to put on and take off. I guess they probably wouldn't help you if you can only wear flip flops. Have you tried any kind of shoe that doesn't cause you pain?
I was not sure by the title of your discussion if you were trying to locate members who do not have diabetic neuropathy or that do have diabetic neuropathy?
Wanting to connect with those diagnosed with non-diabetic idiopathic neuropathy, multi sensory motor neuropathy. Have tried Senexas treatment, cell signaling using cups attached to feet and lower legs, sending electric pulses to damaged nerves, with no success. Now considering laser therapy but hesitating because of high cost and no insurance coverage. Much better success rate according to their patient testimonials but cautious because of trust since everywhere new treatments are appearing everywhere. They want around $2500 for 6 weeks of laser therapy, 3 times weekly. I declined nutrition and purchase of machine for home treatment, preferring to see if laser works first.
Wanting to connect with those diagnosed with non-diabetic idiopathic neuropathy, multi sensory motor neuropathy. Have tried Senexas treatment, cell signaling using cups attached to feet and lower legs, sending electric pulses to damaged nerves, with no success. Now considering laser therapy but hesitating because of high cost and no insurance coverage. Much better success rate according to their patient testimonials but cautious because of trust since everywhere new treatments are appearing everywhere. They want around $2500 for 6 weeks of laser therapy, 3 times weekly. I declined nutrition and purchase of machine for home treatment, preferring to see if laser works first.
Just my opinion but I looked into several neuropathy relief centers and decided not to try them based on the cost and no guarantees. They also had some great patient testimonials. Not saying they weren't helped by the treatments but each of us and our conditions are different and we don't all respond to the same treatments - just my opinion as I have no medical knowledge. The following information may be helpful for evaluating.
@johnbishop - John, I share your opinions on neuropathy relief centers and mainly because what might or could work for one will likely not apply to all. If anyone is getting relief from PN through relief centers, the best to you and you are fortunate. I feel a lot has to do with the unknown cause of the neuropathy and current symptoms. I have been in PT with concentration on balance therapy for 3 months. Hard for me to determine if my balance is better after 3 months but I don't think it is worse. My wife thinks it is about the same, no better BUT no worse since Dec. I will call that an improvement and my therapist noticed in general a slight improvement in balance. I will admit what I'm doing is not easy, it is exhausting and like some relief centers, might not work for all. Even if my balance isn't getting worse for now, it's worth the effort. Like everything in life, we have to make the effort to reap the rewards.
@johnbishop - John, I share your opinions on neuropathy relief centers and mainly because what might or could work for one will likely not apply to all. If anyone is getting relief from PN through relief centers, the best to you and you are fortunate. I feel a lot has to do with the unknown cause of the neuropathy and current symptoms. I have been in PT with concentration on balance therapy for 3 months. Hard for me to determine if my balance is better after 3 months but I don't think it is worse. My wife thinks it is about the same, no better BUT no worse since Dec. I will call that an improvement and my therapist noticed in general a slight improvement in balance. I will admit what I'm doing is not easy, it is exhausting and like some relief centers, might not work for all. Even if my balance isn't getting worse for now, it's worth the effort. Like everything in life, we have to make the effort to reap the rewards.
I like your mindset on PT. I think maintaining is a great thing, or slowing the regression of our PN. I don’t want to stop it to see if I get worse. I see PT as a supervised stretching/exercise program that I’m otherwise not well qualified to do on my own.
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I just read through some of the suggestions on the previous thread. You will see that what worked for one patient was oxcarbazepine, which is a seizure medicine. The itch is most likely neurological (I’m not diagnosing) which is why topical creams don’t work. A seizure med would help. If you are on Gabapentin, you might ask about switching to oxcarbazepine, or another, which is my miracle drug, carbamazepine (Tegretol). I recently started having itching deep in my breast, and had a flashback to 20 years ago, when I had numerous scans for breast itching ( it drove me crazy). I also had scalp itching, and tried every shampoo out there. I know now that I was suffering from SFN and these were symptoms.
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4 ReactionsHello I'm on duloxetine so you think I should change and it will work for the itching it's a nightmare all over my body and scalp and my eyes are also very dry,thanks alot 😊xxx
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1 ReactionThank you. Do you need patient contact information for him to schedule with Neurology?
I take 600 mg of gabapentin 4 times a day and pregabalin 100 mg morning and night!
I have had peripheral neuropathy for quite a number of years. It is related to my 3 spinal surgeries and Degenerative Disc Disease. JJ
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1 ReactionHow long did it take for your body to adjust to it? I get totally nauseated !!
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1 ReactionYou can securely submit contact information for a referral on this website: http://mayocl.in/1mtmR63
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1 ReactionWanting to connect with those diagnosed with non-diabetic idiopathic neuropathy, multi sensory motor neuropathy. Have tried Senexas treatment, cell signaling using cups attached to feet and lower legs, sending electric pulses to damaged nerves, with no success. Now considering laser therapy but hesitating because of high cost and no insurance coverage. Much better success rate according to their patient testimonials but cautious because of trust since everywhere new treatments are appearing everywhere. They want around $2500 for 6 weeks of laser therapy, 3 times weekly. I declined nutrition and purchase of machine for home treatment, preferring to see if laser works first.
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Like -
Helpful -
Hug
2 ReactionsJust my opinion but I looked into several neuropathy relief centers and decided not to try them based on the cost and no guarantees. They also had some great patient testimonials. Not saying they weren't helped by the treatments but each of us and our conditions are different and we don't all respond to the same treatments - just my opinion as I have no medical knowledge. The following information may be helpful for evaluating.
NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
-- https://nccih.nih.gov/health/decisions
-- https://www.nccih.nih.gov/health/pain
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5 Reactions@johnbishop - John, I share your opinions on neuropathy relief centers and mainly because what might or could work for one will likely not apply to all. If anyone is getting relief from PN through relief centers, the best to you and you are fortunate. I feel a lot has to do with the unknown cause of the neuropathy and current symptoms. I have been in PT with concentration on balance therapy for 3 months. Hard for me to determine if my balance is better after 3 months but I don't think it is worse. My wife thinks it is about the same, no better BUT no worse since Dec. I will call that an improvement and my therapist noticed in general a slight improvement in balance. I will admit what I'm doing is not easy, it is exhausting and like some relief centers, might not work for all. Even if my balance isn't getting worse for now, it's worth the effort. Like everything in life, we have to make the effort to reap the rewards.
-
Like -
Helpful -
Hug
7 ReactionsI like your mindset on PT. I think maintaining is a great thing, or slowing the regression of our PN. I don’t want to stop it to see if I get worse. I see PT as a supervised stretching/exercise program that I’m otherwise not well qualified to do on my own.
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Like -
Helpful -
Hug
4 Reactions