Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@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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Thanks let me know if you can think of anything else. This is going to be a really important appt. for me.

REPLY
@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?

Jump to this post

@mikween

Have you considered a spinal cord stimulator implant?

Jim

REPLY
@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?

Jump to this post

Yes, I did have it as i trial at one time and did not like the way that it felt. Do you have one now?

REPLY
@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?

Jump to this post

Hi @mikween), That is a great group of questions and a lot of thought went into them. I hope the doctor is receptive to a lot of questions and has time to discuss them with you. I would try to limit the questions to 4 or 5 of the ones that are most important to you.
I know that they are all important questions but I would prioritize the list and write them down to take with you so you don’t forget any of them (just saying that out of experience ☺).

Just looking them over I would guess that these might be the most important for you (but it’s your list so you need to decide):
– Can you even fix my neuropathy through surgery with my Foot Drop?
– Could it make it worse? (if the surgery doesn’t work or is not successful)
– What is the success rate for the surgery?
– How long will I be off of my foot?
– Does it matter how long someone might have had the neuropathy as to how the outcome might be to the surgery?

Good luck and I hope you are able to have a good dialogue with the doctor.

John

Liked by peggyj4411

REPLY
@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?

Jump to this post

@mikween

I did the trial for a week. It was wonderful not to have pain in my feet. I’m waiting right now for the doctor to schedule the permanent implant. We’ll see how well and how long it will work. It’s the last thing on the list of treatments for me, and I’m very hopeful.

Jim

Liked by peggyj4411

REPLY
@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?

Jump to this post

I am following your search for freedom from neuropathy in your feet. I posted some time ago about my years long search for relief and all of the meds and procedures. The implant was at the end and is still a possibility for me. However I am almost 90 and not eager for any type of surgery so have not acted on that last possibility. Will keep track of your postings. There is some literature out there about the good results pharmacist prescribed cannabis has had for some people. Any comments.

REPLY
@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?

Jump to this post

Hi John. Glad you are getting the right amount of everything to help the neuropathy. Could you give me a list of all you take. I now take Vitamin B12 And B2 as my neurologist has prescribed but don’t think it is helping much. Also take magnesium 500 mg all of this I take once a day and feel like more would be better. Thank you for all the help you can give me. Jan

REPLY
@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?

Jump to this post

Hi Jan, The complete list of the supplements I take can be found here – http://bit.ly/2pLZzey . I would print it out and discuss wtih your neurologist or primary care doctor to make sure there is nothing that conflicts with anything you are currently taking. Also I would join the closed Facebook group that is referenced and read through all their material. You can search their group using the term #theprotocolworks to bring up stories of all of the individuals who have shared their success. Good luck…John

REPLY
@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?

Jump to this post

That is great that it worked for you. I wish that it would have had worked for me.
Best of luck!!!

REPLY
@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?

Jump to this post

Thanks for the input John

REPLY
@mfobrien36

Yes, dealing with it – trying lots of different suggestions – prescriptions, etc. Nothing seems to quite do the job and some (prescriptions) make me worse. Just wondering if anyone has heard of DMSO. My granny had rheumatoid arthritis and used DMSO which seemed to help her. She was on pain meds too – percoset (or something like that and became addicted to it). Now, I’m over 80 years old so you kind of know how long ago the DMSO story was and granny was 92 when she passed away. What I remember was that it was a clear liquid that she rubbed on her knees and ankles and it made her breath smell – not really bad but kind of like garlic… anyway, wondering if any research has been done on the use of DMSO to treat PN?

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@Hi there mfobrien36! I was a bit shocked when I saw your post about DMSO! This very potent and very putrid stuff has been used on Thoroughbred race horses for many many years, and is quite toxic. Yes, it works on lameness, muscle soreness, serious head injuries, laminitis and other equine afflictions. These horses develop very foul garlic breath also. But in both horses and humans, DMSO can cause kidney and liver damage, blood problems and other maladies. My family had harness racing Standardbred horses when I was younger, and DMSO was always a last ditch remedy. Nor did this stuff seems to work very well. Please be careful if you decide to try DMSO, it is an animal drug. Good luck with your research, @mfobrien36! None of us PN sufferers should ever give up because well, you never know! Best Wishes, Peggy

REPLY
@mfobrien36

Yes, dealing with it – trying lots of different suggestions – prescriptions, etc. Nothing seems to quite do the job and some (prescriptions) make me worse. Just wondering if anyone has heard of DMSO. My granny had rheumatoid arthritis and used DMSO which seemed to help her. She was on pain meds too – percoset (or something like that and became addicted to it). Now, I’m over 80 years old so you kind of know how long ago the DMSO story was and granny was 92 when she passed away. What I remember was that it was a clear liquid that she rubbed on her knees and ankles and it made her breath smell – not really bad but kind of like garlic… anyway, wondering if any research has been done on the use of DMSO to treat PN?

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Yup, I agree that it (DMSO) probably is toxic and should be controlled in its usage; however, snake venom is also toxic; warfarin is an adjusted form of rat poison, digitalis could send you to your maker pretty fast as well. If you watch television, you’ll see pharmaceutical companies, smilingly extol their many virtues followed by a mind-boggling array of possible side effects so I guess my thinking is (since it helped granny live more comfortably till her death at 92) I wonder if any further investigation has been done on DMSO’s effectiveness in treatment of the aforementioned maladies or if the research has determined that it is a dead end. I understand that there’re places that sell it but whether or not it is medical grade – who knows (if there is such a thing). So – certainly caution and getting medical advice would be the smart thing to do. P.S. My grandfather used to race “sulkies” Thanks Peggy for your good input…. Mary

REPLY
@mfobrien36

Yes, dealing with it – trying lots of different suggestions – prescriptions, etc. Nothing seems to quite do the job and some (prescriptions) make me worse. Just wondering if anyone has heard of DMSO. My granny had rheumatoid arthritis and used DMSO which seemed to help her. She was on pain meds too – percoset (or something like that and became addicted to it). Now, I’m over 80 years old so you kind of know how long ago the DMSO story was and granny was 92 when she passed away. What I remember was that it was a clear liquid that she rubbed on her knees and ankles and it made her breath smell – not really bad but kind of like garlic… anyway, wondering if any research has been done on the use of DMSO to treat PN?

Jump to this post

Hi Mary, there has been some research done on DMSO used for pain. Did a quick search using Google Scholar (https://scholar.google.com/) – here’s what DMSO for pain returned (filtered by 2017 on the left of the search results):

http://bit.ly/2rvMyqL

John

REPLY

I looked at webmd.com and wikipedia.

I am definitely scared away. There are too many risks.

REPLY

For anyone living in the Minneapolis area, the Minnesota Neuropathy Association is having a meeting this month. I attached a meeting flyer. Great place to meet with and discuss peripheral neuropathy issues.

Next Meeting: 1:00 pm – Thursday, June 29th

Common Foot Ailments and Conditions for Patients with Neuropathy with or without Diabetes

What’s is a hammertoe?
Can you prevent an ingrown toenail?

Find out answers to these questions and so much more when April Jones, Clinic Manager for Pinnacle Foot and Ankle Clinics in Edina, Burnsville, and Coon Rapids comes to talk about common foot ailments and conditions that can lead to deformities and other health concerns for patients who suffer from neuropathy as well as those diagnosed with diabetes. From bunions to routine foot care, come find out why a podiatrist can be the best care you can give your feet to keep them happy and healthy.

Meeting location:
St. Michael’s Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437

Meeting Flyer is attached.

Shared files

MNA flyer 6-17 (MNA-flyer-6-17.pdf)

REPLY
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