oh this one is so mine.
b12 deficiency is the main differential dx that they have to rule out in ms. characteristic spinal lesions caused by b12 deficiency are the cervical, and the thoracic(dorsal) lesions (like mine). some studies argue that ms patients are not low in b12 because there aren't a significant number under 300. some argue that the "normal" range is in fact too low. you will find a link posted in here somewhere, to a site that details b12 testing for practitioners. this site indicates that health care practitioners should conduct secondary tests for b12 deficiency for any result under 400.
in my case, the clinic did not think that b12 would be an issue because i tested at 300. hmm. nobody suggested any secondary testing, because the computers aren't set up to flag levels under 400 for further investigation. hmmm. however, i was supplementing heavily at the time (why weren't my numb feet waking up this time? it had always worked before!), and i was too scared of the possible backlash if i stopped and did a washout to get a better baseline test.
previously, when not supplementing, i had been tested at "less than 75" meaning their test was not sensitive enough to figure out if my b12 level was 74, or 4. this nuance made my b12 issues slip through the cracks as that particular item, being alpha-numeric, did not feed nicely into my family doctor's trend chart for my b12 level. were they able to detect your level?
all in all, they decided that in spite of my telling them that i had been a strict vegan for 15 years, that ms was more likely than b12 deficiency because i had oligoclonal bands in my spinal fluid, which would not be related to b12, and i also had a number of brain lesions, including the ominous "dawson's fingers" which are apparently characteristic findings in ms patients, and not in b12 deficiency. never mind that perfectly normal people are sometimes found to have lesions in their brain upon autopsy.
that said, i was pretty sure that b12 was in fact a significant chunk of my problem even if it wasn't the sum total of all my health issues. i thought it rather more reasonable to keep on with the b12 in spite of the ms diagnosis. however, b12 had always topped me back up to normal in the past. this time, i was taking higher doses for a longer time period, and it didn't work as well as before. what DID work was when i added the rest of the complex to my supplement plan. i had taken b12 on its own for too long, and it needed the complex to work properly.
in the 70s this klenner fellow had a lot of success treating myasthenia gravis and ms through a supplement protocol that heavily relies upon the b complex vitamins among other things. i modified his regimen to make things a little more manageable and had shockingly quick results. one of the things in his protocol that i had omitted was the magnesium. i had some recent problems with my throat and was advised by a clever pharmacist to take magnesium. it sorted me right out, in about 2 days. crazy! someone recently asked me about the klenner protocol so i went back over it and saw the magnesium on his list, and laughed at myself for thinking i knew better and didn't have to take his magnesium recommendation.
i recently got diagnosed with carpal tunnel too, and when i investigate that i see deficiency of b2 and b6. so it's back to the klenner protocol for me!
one thing about klenner, he designed his protocol in the pre-dawn of understanding related to vitamin D3 and immune system function. if you just throw D3 into his protocol and end up taking it at the same time as your magnesium, you don't get klenner's intended benefit of magnesium on its own. so if you decide to follow his regimen in part or in total, make sure you get part of your daily magnesium dose taken at a different time from the D3.
i skip the liver extract in his protocol, personally, i think that's just a uric acid thing, ms patients are typically around 194 uric acid, healthy controls are at 290, so i eat liver instead. yes, the vegan thing went right out the window when i started trying to figure out the biochem!
so. much more than b12. but yes, take it. take lots. sub-lingually. methylcobalamin, or hydroxycobalamin. and wash it down with a b100 complex.
do you know why you are extremely low in b12 yet? have they tested you for parietal cell antibodies?