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Old 11-15-2011, 01:24 AM   #1
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vitamin b12 can help anyone know?

I have been suffering with severe periferal neuropathy in my feet , terrible burning &numbness and now it's affecting my hands, my doctors don't care the medication is'nt helping , i've heard the vitamin b12 can help anyone know if it does help or not.

 
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Old 11-15-2011, 06:54 AM   #2
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Re: bull353

It does help some....but I'd suggest you talk w/a Neurologist and have them test your level.
J

 
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Old 11-15-2011, 04:22 PM   #3
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Re: bull353

Hi, Thanks for your reply to my post , my neurologist does not want to see me he says there's nothing more hecan do . All he does is perscribe lyrica . I've begged him to help ,he just tells me to go to casulalty.

 
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Old 11-16-2011, 07:14 AM   #4
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Re: bull353

Quote:
Originally Posted by bull353 View Post
Hi, Thanks for your reply to my post , my neurologist does not want to see me he says there's nothing more hecan do . All he does is perscribe lyrica . I've begged him to help ,he just tells me to go to casulalty.
Wow!! That is so wrong on their part and so sorry you are having to deal w/those kind of doctors.

I'm on my 4th Neurologist after not liking the answers the first 3 gave me...and I'm REALLY thinking to try for a 5th...I've had a BUNCH of blood and zap tests...a spinal tap and they removed some of my left ankle nerve for a biopsy to be told "they can't treat me until the know why I have PN".

I was on Lyrica and loved it but had to stop due to my Insurance wouldn't pay for it so went on Neurontion...then changed Ins and was allowed on Lyrica...tried it but did NOT have a good reaction to it..so went back on Neurontin...I take the max dose which is 3600mg a day...helps me be able to get out of bed and work but is NOT the answer...even last night my feet felt like someone lite them on fire

As far as Vit B12...#4 had me start getting monthly shots of it to see if it would help me....was on for 6 months and retested w/zap tests and he said there wasn't an improvement so stopped the shots. BUT Kath(my wife) just last week and got me some Vit B12 pills which I've started to take just incase they help me even just a little.

I really hope you find the answers you are looking for...know you are NOT alone and this board is full of great people.

Hope you have a pain free Wednesday.
J

 
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Old 11-16-2011, 01:47 PM   #5
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Re: bull353

Hi ,thanks for your reply i have exactly the same sensations in my feet terrible burning like someone holding a blowtorch to my feet, i almost chopped them off one day with an axe the pain was soo bad that i was so desperate to get rid of the pian i would have done anything .it's been 15years now, it's starting to afect my hands now they get so tight that i can barely hold the basics like a cup or a pen , or preparing food.

 
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Old 11-16-2011, 02:21 PM   #6
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Re: bull353

Quote:
Originally Posted by bull353 View Post
Hi ,thanks for your reply i have exactly the same sensations in my feet terrible burning like someone holding a blowtorch to my feet, i almost chopped them off one day with an axe the pain was soo bad that i was so desperate to get rid of the pian i would have done anything .it's been 15years now, it's starting to afect my hands now they get so tight that i can barely hold the basics like a cup or a pen , or preparing food.
I'm very sorry you can relate...as I've told people I wouldn't wish this condition on my worst enemy.

It for sure is unlike any pain I've ever had...even my 3 blood clots in 3 yrs weren't as painful as my PN is on a daily basis.

Thankfully my hands are more numb then painful most of the time...BUT my typing can really be bad at times due to the PN.

Know we are out here and on your side. I've vented here more then a few times...don't keep things in...there are many here that can relate w/our conditions.

Have a great rest of the week and weekend.
J

 
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Old 11-16-2011, 07:26 PM   #7
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Re: vitamin b12 can help anyone know?

Hi Bull353 - Regarding your B12 question, if you are deficient in B12 (your doctor should have checked this), B12 should help, but even if you are not deficient, B12 may help your neuropathy. A very good neurologist who spoke to our neuropathy support group last month said that some people with neuropathy are what he called "B12 responsive," meaning extra B12 helps their neuropathy even when they aren't B12 deficient. It may be worth trying in case you are one of those people.

Have you ever tried meds other than Lyrica? There are so many different meds that help neuropathy. If your neurologist hasn't tried these for you, definitely get a new neurologist. Besides Lyrica (or Neurotin/Gabapentin, a similar med), Cymbalta and Tramadol are probably the meds that I hear most often as being helpful to people in our support group.

Best to you, Ruby

 
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Old 11-17-2011, 12:57 PM   #8
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Re: vitamin b12 can help anyone know?

Hi mate, your gp can order a serum b12 test, so no need to wait to see a neuro for this simple test.
I think why some people are still responsive to this vitamin is that the standard levels are set far to low, the levels are outdated here in Australia and the US.
The Japanese neuropathy experts say a score lower than 500 is very suspicous of b12 defiency were as our docs pass a much lower score, i like to keep mine well over a score of 1000.
The active form of B12 is methylcobalamin, which is the best form as it can go to work straight away were as b12 cynocobalamin has to converted by our bodies to the active form therefore only getting about 1 or 2 percent of the active form available for our cells to work with.
B12 methylcobalamin is normally pretty expensive in Australia, most chemists and health stores here in OZ only stock b12 cynocobalamin, i buy mine from the US through an on line store, only takes about 6 days to get here and is much cheaper that way.
With the dosage, i would take 5 mg daily for about 3 months then at least 1 mg daily on going, you should only take this vitamin on an empty stomache for max`absorbtion, you can not overdose on this vitamin, it is very safe.

good luck
Aussie

 
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Old 11-17-2011, 11:07 PM   #9
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Cool Re: vitamin b12 can help anyone know?

Hi, Thanks for the info on b12 (methylcobalamin). could you provide info regards the us online store from which to purchase it.

 
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Old 11-18-2011, 01:49 PM   #10
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Re: vitamin b12 can help anyone know?

The rules on this forum do not permit us to mention commercial websites, sorry.

 
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Old 11-21-2011, 07:31 AM   #11
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Re: vitamin b12 can help anyone know?

After reading this thread and thinking about it..

K picked up some IIRC 1000mcg Vitamin B12 pills which I have started to take one in the am. Figure it can't hurt me and MIGHT help me.

Thanks to all that have posted.
J

Last edited by RisingParrot; 11-21-2011 at 07:33 AM.

 
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Old 11-21-2011, 11:29 PM   #12
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Re: vitamin b12 can help anyone know?

I am having a mixture of Vitamin B6 and B12 injections on a weekly basis and whether or not it helps my PN, it reduces stress levels and makes me feel good. I am also on Lyrica - just had my dosage doubled to 150 mg twice a day which helps but I still have the good days and the bad days. Take care

 
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Old 11-21-2011, 11:51 PM   #13
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Re: vitamin b12 can help anyone know?

I am having a mixture of Vitamin B6 and B12 injections on a weekly basis and whether or not it helps my PN, it reduces stress levels and makes me feel good. I am also on Lyrica - just had my dosage doubled to 150 mg twice a day which helps but I still have the good days and the bad days. Take care

 
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Old 11-22-2011, 01:17 AM   #14
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Re: vitamin b12 can help anyone know?

Has you vit B12 level been done ? if low, was your ' B12 binder' levels done ? If the B12 level was low you should start immediately on B12 IM injections ( a loading course then monthly maintenance). You must see a Hematologist and a Neurologist to have nerve conduction studies done on you limbs. The most effective form of B12 is Methlycobalamin - do not accept cyano- it is poorly' absorbed', hydroxy is better but the methyl is super- effective , it is not expensive either.
If your GP does not refer you immediately then go privately to a Neurologist who will take care of diagnosis and treatment - later a hematologist can sort out the possible cause ( less important). As this deficience causes intermittant stripping of the nerve covering and also affects the brain, it's important that you take care of it immediately . Are you taking any kind of supplements ? some can cause burning - in the meantime, get a strong B complex tab- just in case some of your other B's are low too, but the B12 situation needs immediate study.
I have a B12 deficiency , same symptoms as yours but as I worked with consultants, I had mine taken care of quickly.

 
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Old 11-22-2011, 01:34 AM   #15
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Re: bull353

Was your B12 level low when he started the monthly shots? It's best to start with an prolonged ' loading', THEN monthly maintenance with methylcobalamin. Another thing to look at regarding the burning sensation is overload of some vitamins. B12 pills are useless, just take a strong B complex and stop any other vitamin/mineral supplement -except D3.

 
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