Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@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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Hi @16jody, I think it's a good idea to discuss it with your doctor to make sure there are no interactions if you are taking other medications. The doctor can order blood tests to see if you have any B vitamin deficiencies.
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

Thank you, 

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 @johnbishop, I think there is a problem again with the post the last one I got was from @16jody yesterday. And then I got the Digest this morning. Could you please look into this for me?
Thanks

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, I'm pretty sure they are still making some tweaks to the website after they made some major updates. Please hang in there as it should return back to normal soon. I've seen a few glitches myself.
John

REPLY

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?

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: Thursday, May 25, 2017 – 1:00 PM
MINNESOTA NEUROPATHY ASSOCIATION - 3rd Program of our 21st Anniversary Series

We welcome Nick Rich, PharmD (doctor of pharmacy), a compounding pharmacist, owner of Lake Elmo Pharmacy, who will be speaking about: alternative treatments to conventional medicine for the treatment of neuropathic pain. He will also tell us what a compounding pharmacist does, and how it may be different from what your pharmacist does. He has over 13 years of experience as a compounding pharmacist, and is one of two accredited compounding pharmacies in Minnesota. This is a program you won’t want to miss!!!

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

Directions/Map are on the website: http://www.neuropathy-mn.org/ (redirects to minnesotaneuropathyassociation.org)

Shared files

MNA flyer 5-17 (MNA-flyer-5-17.pdf)

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 @mfobrien36 - I haven't heard of DMSO (Dimethyl sulfoxide) but there is some information available on it from Mayo Clinic - http://mayocl.in/2ptIQ3m.

There is a discussion started here by @dongee and @alysebrunnella - http://mayocl.in/2r2pOB1

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

@colleenyoung

I have taken Multi vitamins, vitamins b complex, c, and d. I stopped taking vitamin e some time ago. These in addition to the long list of meds: for peripheral neuropathy (Duloxetine and MScontin and Lidocaine cream), depression (Bupropion), anxiety (Clonazepam), allergies (Claritin and Benadryl), breakthrough pain (Percocet), reflux (Omeprazole), arthritis (NSAIDs and Voltaren cream), and occasional lower back muscle pain (Orphenadrine).

I was scheduled to have a spinal cord stimulator implant, but blood tests showed anemia. Over the past couple of weeks, with a series of blood draws, the hemoglobin has been going back up, so I'm getting back in line for the implant, sometime in June. The trial gave me a wonderful week of pain relief, so I'm looking forward to the permanent implant. Can't wait! I'm hoping that lessening the pain level will mean reducing or even eliminating some meds.

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

@johnbishop, Hi John I wanted you to read over the questions that I came up with for the doctor since you were the only one that replied
last time. Let me know if you can think of anything else. Thanks for all of your help. I will let everybody know how my appt. goes on May 16th.

Have you ever heard of Alpha-Lipoic Acid?
Have you ever heard of Lidocaine injections? And could that work on me or the patches?
Can you even fix my neuropathy through surgery with my Foot Drop?
The Specifics about the surgery?
Could it make it worse?
What is the success rate for the surgery?
How long will I be off of my foot?
In a cast and for how long?
Therapy afterwards and for how long?
How long before I see improvements?
Do you have any referrals?
How many procedures like this have you performed?
Are they all the same kind of surgery?
Even though people may have different reasons that might have caused the neuropathy
Does it matter how long someone might have had the neuropathy as to how the outcome might be to the surgery?
Have you ever heard of Alpha-Lipoic Acid?
Have you ever heard of Lidocaine injections? And could that work on me or the patches?
Can you even fix my neuropathy through surgery with my Foot Drop?
The Specifics about the surgery?
Could it make it worse?
What is the success rate for the surgery?
How long will I be off of my foot?
In a cast and for how long?
Therapy afterwards and for how long?
How long before I see improvements?
Do you have any referrals?
How many procedures like this have you performed?
Are they all the same kind of surgery?
Even though people may have different reasons that might have caused the neuropathy
Does it matter how long someone might have had the neuropathy as to how the outcome might be to the surgery?

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

@mcween

Some excellent questions. I've learned that if I don't write out my questions, I forget to ask them until I walk out the door.

Jim

REPLY
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