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.
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.
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.
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.
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.
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
The Following User Says Thank You to Ruby8 For This Useful Post: bull353 (11-16-2011)
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.
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
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
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.
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.
I had all the tests from the glucose fasting to the Vitamin B deficiency and my Vitamin B levels were in the normal range. I just read that Vitamin B helps with nerve pain so I go to the clinic sister once a week - she tells me that my body absorbs what it needs and "dumps" the rest.
I have been to a Neurologist and in fact had my second appointment a month or so ago, and I told him what I had been doing and he seemed quite happy with this.
He did however give me a very strong pain pill - have not got the name with me (left my handbag at home today idiot that I am) which really does help - I will post again tomorrow with the name
I had all the tests from the glucose fasting to the Vitamin B deficiency and my Vitamin B levels were in the normal range. I just read that Vitamin B helps with nerve pain so I go to the clinic sister once a week - she tells me that my body absorbs what it needs and "dumps" the rest.
I have been to a Neurologist and in fact had my second appointment a month or so ago, and I told him what I had been doing and he seemed quite happy with this.
He did however give me a very strong pain pill - have not got the name with me (left my handbag at home today idiot that I am) which really does help - I will post again tomorrow with the name
It doesn't dump B12, that gets stored in the liver. Eat liver once a week - if you don't have a cholesterol problem. Some people have low levels of B 12 binders, and so normal levels of B 12 are not sufficient. My neurologist noticed I had nerve dysfunction whilst my level was normal, I did another 'reloading' and the problem was solved, I
must stay super- saturated with B12. I get an IM dose every 2 weeks now and haven't had symptoms in a year.
My spouse has just started with this pain... feet and in five month redness is showing on hands... that's how it started with the feet...
We are finding ourselves also bounce from one specialiste to an other, with nothing more but having to beg for painkiller as 4 extra-strenght Tylenol every 3hours doesn't help or is good for the liver...
In my reaserch I found that B12 defficiency can be cause of Neuropathy symptoms, but is extremly hard to diagnose... and it seems that B vitamin in general is the only altought not prooven treatment for nerve damage, and only when the damage is not permanent.
We have tried B Complexe supplements, and it does seems to help... and as far as all my research not really possible to over does on B vitamins... So I strongly recommand to try it... and to seek an other neurologist, or perhaps some sort of auto-immune disorder specialiste, as B12 dificiancy is consider and auto-immune disorder stemming from sort cells in the intestins that are in charge of absorbtion!
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.
Re: vitamin b12 can help anyone know? 
