Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@johnwburns

I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren’s syndrome.  I take gabapentin and duloxetine but pain isn’t the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you’ll have better luck with the chemo induced version.

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I guess I am lucky because I don’t seem to have any side affects from Gabapentin and it seems to help a little to take it. Going to up the dosage from 1200 mg to 1500mgs. Or try something else. Maybe more vitamins. Good luck all. I feel your pain and will send a prayer up for all of you.

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@johnbishop

About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I’ve come to regret it a little since it’s gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I’m waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it’s associated with pre-diabetes but I’m not buying that diagosis just because I’ve had it for a long time and do not have diabetes. I think it’s related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I’m really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening…praying that you all will find some relief.

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Very happy for you crystalgal. Even a little less pain and other symptons are better than nothing. Good for you.

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@johnbishop

Hello @mikween, If it were in your place I would want to wait until I received the EMG and met with a neurologist to see it the diagnosis for your neuropathy has changed and if there are any underlying conditions causing the neuropathy (compressed nerves, damaged nerves, etc..). Then I would want specifics about the surgery – what is being done specifically and what the doctor is trying to correct fix that will help with the neuropathy. I would also want to know specifically what are the risks involved – what happens if the surgery goes wrong, could it get worse? If the surgery is a success what can I expect? I guess my last question would be what is the success rate for the surgery.

Good luck on whatever you decide.

John

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Wow! There’s been a lot of activity and information-sharing recently. I thought I’d add my two cents.

I’m taking 1200mg of gabapentin daily. I also take a 500mg magnesium tablet in the evening. Even with the medication and supplement, I’ve had severe muscle spasms in the evening and at night. I’ve had idiopathic peripheral polyneuropathy for 23 years, but 3 years ago the muscle twitches and creepy-crawly sensations began in my feet and legs in the evening. After having tried just about everything else (including the soap under the sheets), my neurologist was about to prescribe quinine for me, but after researching the side effects of the medication, I decided against it–at least for now. While doing my research, I found a Japanese study using a vitamin B therapy that was fairly successful, and my neurologist gave me his blessing to try the same therapy. I’ve been taking B1, B6, B12 and riboflavin in about 30mg doses 3 times a day, along with the gabapentin. And also I take 1000mg of B12 every evening. What I’m taking is the OTC Nature Made B-100 vitamins. I also sip water laced with tonic water throughout the evening. I’ve been on this regimen for over a week. I had no muscle spasms last week, just slight twitching in my feet and legs in the evening. I can live with that and the neuropathy which is primarily weird, arbitrary sensations, but the awful spasticity and cramps that keep me up at night sobbing in pain truly are torture.

If anyone else has tried the Vitamin B therapy, please post a reply with your thoughts. Thanks, everyone.

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@johnbishop

Hello @mikween, If it were in your place I would want to wait until I received the EMG and met with a neurologist to see it the diagnosis for your neuropathy has changed and if there are any underlying conditions causing the neuropathy (compressed nerves, damaged nerves, etc..). Then I would want specifics about the surgery – what is being done specifically and what the doctor is trying to correct fix that will help with the neuropathy. I would also want to know specifically what are the risks involved – what happens if the surgery goes wrong, could it get worse? If the surgery is a success what can I expect? I guess my last question would be what is the success rate for the surgery.

Good luck on whatever you decide.

John

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I am taking alpha lipoic acid (ALA) and B vitamins for neuropathy. I have been told to watch the form the B vitamins are in. Bs are not well absorbed by the body, and the form they are in helps with absorption. B1 should be benfotiamine, not tiamine HCI, B6 should be Pyridoxal-5-Phosphate (P-5-P) not pyridoxine HCl, and B12 should be methylcobalamin not cyancobalamin. It doesn’t matter how much of these we take, if the body is not absorbing them, we just flush them away! Also, you might want to check the tonic water; I do not think it contains quinine anymore. I also use magnesium, but I get the liquid form called Re-Mag on line. It has helped me tremendously with the leg cramps and also has made my nails stronger — finally a side effect that is positive! I do know what you mean about the leg cramps as I’ve been there often. I tried the soap too, but to no avail. Hope this helps a bit,

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@johnbishop

Hello @mikween, If it were in your place I would want to wait until I received the EMG and met with a neurologist to see it the diagnosis for your neuropathy has changed and if there are any underlying conditions causing the neuropathy (compressed nerves, damaged nerves, etc..). Then I would want specifics about the surgery – what is being done specifically and what the doctor is trying to correct fix that will help with the neuropathy. I would also want to know specifically what are the risks involved – what happens if the surgery goes wrong, could it get worse? If the surgery is a success what can I expect? I guess my last question would be what is the success rate for the surgery.

Good luck on whatever you decide.

John

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Hi @magg, there has been a lot of sharing which is great! I would just caution folks to always check with their doctor or pharmacist if you are taking other medications to make sure there are no concerns or conflicts with your current medications.

I take B12 and Biotin as part of my supplements. I take the liquid form of B12 which has more bio-availability. I take 2ml (5,000 mcgs) of the B12 in the morning and 2 ml at night. I take 2 Biotin 10,000 mcg capsules at noon each day. I have to take it at least 2 hours before or after I take another supplement (sodium stabilized R Alpha Lipoic Acid 1200 mg daily) that’s part of my daily supplements regimen. I also take Magnesium 200 mg tablets – 2 in the morning and 2 in the evening for 800 mg daily. I had a discussion with my doctor who ran the list of supplements I am taking by the Mayo pharmacist.

I wished more research was going into the fix the problem – damaged nerves rather than on block the pain and make it go away symptom. If you can repair the nerves or start repairing them, the pain will go away or lessen as the nerves come back to life…unless they are severed, crushed or damaged beyond repair. Layman patient with zero medical knowledge or background is speaking here of course.

I really do hope each and every one of you find something that helps. I don’t have the pain that a lot of you do but I do have the numbness and tingling. I have also had the old man’s walk since I was in my 50’s which was reported to me by my better half.

John

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@johnbishop

Hello @mikween, If it were in your place I would want to wait until I received the EMG and met with a neurologist to see it the diagnosis for your neuropathy has changed and if there are any underlying conditions causing the neuropathy (compressed nerves, damaged nerves, etc..). Then I would want specifics about the surgery – what is being done specifically and what the doctor is trying to correct fix that will help with the neuropathy. I would also want to know specifically what are the risks involved – what happens if the surgery goes wrong, could it get worse? If the surgery is a success what can I expect? I guess my last question would be what is the success rate for the surgery.

Good luck on whatever you decide.

John

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Thanks @amkaloha and @johnbishop. I was taking alpha lipoic acid for several months, but didn’t notice a difference in my symptoms. What did help at the time was the B12 I started taking. Within a week after starting the B12, the shooting, electric-like pains and tingling diminished significantly. I’ll try the B vitamins you suggest if I’m not taking the right ones. I’ll also try the liquid magnesium. I’m really open to anything at this point. Tonic water does indeed contain quinine; it says so on the label. I like the taste also. You just can’t buy quinine tablets over the counter anymore; the FDA discontinued them in the 1990s because of the side effects. But I understand that it was very helpful to people with leg cramps. A question for either of you: Where do you get your vitamin supplements? I’ve been ordering mine from Puritan’s Pride for several years.

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@johnbishop

Hello @mikween, If it were in your place I would want to wait until I received the EMG and met with a neurologist to see it the diagnosis for your neuropathy has changed and if there are any underlying conditions causing the neuropathy (compressed nerves, damaged nerves, etc..). Then I would want specifics about the surgery – what is being done specifically and what the doctor is trying to correct fix that will help with the neuropathy. I would also want to know specifically what are the risks involved – what happens if the surgery goes wrong, could it get worse? If the surgery is a success what can I expect? I guess my last question would be what is the success rate for the surgery.

Good luck on whatever you decide.

John

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That’s interesting about the quinine. I knew the FDA did take it away in some form. Interesting that they left it in the tonic water! As far as getting supplements, Vitacost.com has a wonderful site and they are cheaper than other sites. I get my magnesium from Dr Carolyn Dean’s site. You can google Re-Mag. She has a lot of information on her products. My husband takes this form of magnesium also for his heart arythmeia. She has info on that too. There are many forms of magnesium, some act like a laxative, others calm you. I think it’s important to know or you won’t get the results you are seeking. Good luck to you.

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WHICH form of Magnesium? I think one is preferred in tablet form.

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@johnbishop

Hello @mikween, If it were in your place I would want to wait until I received the EMG and met with a neurologist to see it the diagnosis for your neuropathy has changed and if there are any underlying conditions causing the neuropathy (compressed nerves, damaged nerves, etc..). Then I would want specifics about the surgery – what is being done specifically and what the doctor is trying to correct fix that will help with the neuropathy. I would also want to know specifically what are the risks involved – what happens if the surgery goes wrong, could it get worse? If the surgery is a success what can I expect? I guess my last question would be what is the success rate for the surgery.

Good luck on whatever you decide.

John

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Thank you! I’ll check out Dr. Dean’s website.

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@johnbishop

Hello @mikween, If it were in your place I would want to wait until I received the EMG and met with a neurologist to see it the diagnosis for your neuropathy has changed and if there are any underlying conditions causing the neuropathy (compressed nerves, damaged nerves, etc..). Then I would want specifics about the surgery – what is being done specifically and what the doctor is trying to correct fix that will help with the neuropathy. I would also want to know specifically what are the risks involved – what happens if the surgery goes wrong, could it get worse? If the surgery is a success what can I expect? I guess my last question would be what is the success rate for the surgery.

Good luck on whatever you decide.

John

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I order my supplements through Amazon.com and get the 2 day free shipping with the Prime membership. I buy the Seeking Health brand of B12 – Optimal Lipsomal Active B12 with L-5-MTHF. I currently use the Dr Best’s High Absorption Magnesium 200 mg tablets but have been thinking of switching to capsule form that is supposed to have a higher absorption. I will have to check out the Re-Mag.

Thanks!
John

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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@Hi Jodi! I was so glad to hear back from you! ReQuip is a prescription drug originally subscribed for Parkinson’s Diseaseor any other spasmotic disease of the nervous. I don’t know much abour ReQuip, except to know it calms and relaxes the spasms. You start out with a low dose,(I also began Valium at the same time) and work up to a dose that finally helps you.ReQuip is very good, but my doctor had to keep increasing the dosage. Requip works on the nerves that cause those awful spasms.That’s about all I know at the moment. Thank God you had a peaceful night–Praise the Lord for that! Why not a bar of soap, I am willing to try Even banana peels under my pillows instead of drugs! Good luck, Jody. Hope you get to try ReQuip, it is a really good drug at the right dosage. More good nights ahead, Virtual Hugs, Peggy

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@mikween

NOW, I WOULD LIKE TO KNOW IF ANYONE HAS EVER HAD THE SURGERY FOR PERIPAL NEUROPATHY? And if you have has it worked? I have an appt. May 12th with a doctor for a consult to see if I would be candidate? It might not even work for me since I have foot drop or maybe because it has been to long. Back in Sept. Of 08. I inhaled Carbon Monoxide on my boyfriends boat sitting down in the cabin Indian style fir about a day at least. That is how this horrible journey of neuropathy and foot drop began. Of course years later I found out that my foot drop could have been corrected within the first couple of years that I had it. But my neurologist just told me if it did not come back in a couple of years it would never come back. Told me nothing about these surgeries that were out there. One day I was done research and found out it could be done. I am currently still working with one doc, but I am sure I am way out of the time frame. Thanks to the doc… If anyone knows anything good for chronic pain for neuropathy please let me know. As I said earlier I am on Suboxone after being on opioids for many years. I just ordered some cream called lidocaine from Amazon that I read is good. I have been doing so much research myself… I also read about lidocaine injections.. Has anyone ever heard of that?

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Does anybody know how to contact her. She posted one time about Foot Drop, Which I am very interested.  I thought that I replied to her the right way but have never heard back from her.  So, again if someone knows how to get in touch with @jewel8888. Please let her know that I have some questions for her.  Thanks

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@mikween

NOW, I WOULD LIKE TO KNOW IF ANYONE HAS EVER HAD THE SURGERY FOR PERIPAL NEUROPATHY? And if you have has it worked? I have an appt. May 12th with a doctor for a consult to see if I would be candidate? It might not even work for me since I have foot drop or maybe because it has been to long. Back in Sept. Of 08. I inhaled Carbon Monoxide on my boyfriends boat sitting down in the cabin Indian style fir about a day at least. That is how this horrible journey of neuropathy and foot drop began. Of course years later I found out that my foot drop could have been corrected within the first couple of years that I had it. But my neurologist just told me if it did not come back in a couple of years it would never come back. Told me nothing about these surgeries that were out there. One day I was done research and found out it could be done. I am currently still working with one doc, but I am sure I am way out of the time frame. Thanks to the doc… If anyone knows anything good for chronic pain for neuropathy please let me know. As I said earlier I am on Suboxone after being on opioids for many years. I just ordered some cream called lidocaine from Amazon that I read is good. I have been doing so much research myself… I also read about lidocaine injections.. Has anyone ever heard of that?

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Hi @mikween – She should see your message above because you typed her tag – @jewel8888 which will send her an email that someone tagged her. You can also send a private message by clicking on her username link in your message above and it will take you to her profile. From there you can click the envelope to send her a private email. I think it would be better is you tag her like you did above and ask your questions. That way others will also benefit from any answers or may be able to also provide an answer for you.

John

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Hi,
Many of you were recently discussing the effectiveness of vitamin B in reducing the symptoms of neuropathy. I showed your conversation to a pharmacist here at Mayo Clinic. She offered this information:

“Taking Vitamin B1 (thiamine) and Vitamin B6 (pyridoxine) daily has been shown in some trials to reduce symptoms of neuropathy. Other research suggests adding Vitamin B9 (folic acid, L-methylfolate) and B12 (cyanocobalamin, methylcobalamin).

– Vitamin B6 and B9 are well absorbed by tablet, capsule or injection. B6 can be administered with food to reduce upset stomach.
– Vitamin B1 is adequately absorbed in tablet or capsule form and rapidly and completely absorbed after injection into the muscle. The active metabolite of thiamine is pyridoxal-5-phosphate.
– Vitamin B12 absorption can vary from person to person, but is less well absorbed by mouth (tablet, capsule, sublingual) than the rapid and complete absorption after injection under the skin or into the muscle. Limited evidence suggests B12 nasal spray (Nascobal) achieves levels similar to injection into the muscle.

Befotiamine and methylcobalamin are marketed as dietary supplements. Metanx is a medical food marketed for diabetic neuropathy and contains L-methylfolate calcium (an active form of Vitamin B9, folic acid), pyridoxal-5-phosphate (an active form of Vitamin B6, thiamine) and methylcobalamin (Vitamin B12) along with algae-S powder. This is a medical food but is sometimes covered by insurance.”

For those of you with good results in treating neuropathy, what products are you using?

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@colleenyoung

Hi,
Many of you were recently discussing the effectiveness of vitamin B in reducing the symptoms of neuropathy. I showed your conversation to a pharmacist here at Mayo Clinic. She offered this information:

“Taking Vitamin B1 (thiamine) and Vitamin B6 (pyridoxine) daily has been shown in some trials to reduce symptoms of neuropathy. Other research suggests adding Vitamin B9 (folic acid, L-methylfolate) and B12 (cyanocobalamin, methylcobalamin).

– Vitamin B6 and B9 are well absorbed by tablet, capsule or injection. B6 can be administered with food to reduce upset stomach.
– Vitamin B1 is adequately absorbed in tablet or capsule form and rapidly and completely absorbed after injection into the muscle. The active metabolite of thiamine is pyridoxal-5-phosphate.
– Vitamin B12 absorption can vary from person to person, but is less well absorbed by mouth (tablet, capsule, sublingual) than the rapid and complete absorption after injection under the skin or into the muscle. Limited evidence suggests B12 nasal spray (Nascobal) achieves levels similar to injection into the muscle.

Befotiamine and methylcobalamin are marketed as dietary supplements. Metanx is a medical food marketed for diabetic neuropathy and contains L-methylfolate calcium (an active form of Vitamin B9, folic acid), pyridoxal-5-phosphate (an active form of Vitamin B6, thiamine) and methylcobalamin (Vitamin B12) along with algae-S powder. This is a medical food but is sometimes covered by insurance.”

For those of you with good results in treating neuropathy, what products are you using?

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Can someone please respond with an email an include the name @jewel8888, so i can respond to her with a private message. Because I have not been able to get achold of her and I have accidentally dedeleted the message that she sent. Hopefully that will work. Thanks fior all of your help

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