I'm new to the site although I've lurked for a while, but I thought I'd pop in and mention something quite interesting that I discovered recently.
Trying to cut a long story a lot shorter, I developed ataxia and no one could pin down the cause. I was also quite a while ago diagnosed with a B12 deficiency. The B12 seemed to improve things a great deal but doctors said that the problem had been reversed and refused to give me a shot more than once every couple of months.
I was certain the B12 was something to do with things though, but didn't get too far in finding anything out - then, over the Christmas period I was talking to a woman (via a forum for people who do book reviews) who had just read a book called B12 Deficiency and Chronic Illness by a guy called Mike Newman. She said that B12 deficiency was at the bottom of a lot of problems related to all kinds of stuff (she has CFS) and that ataxia was one of them and that modern docs had been getting it wrong and B12 deificency was actually more a condition of the nervous system than the blood.
I was seriously dubioius, but, like many of you, a bit desperate as my condition is, on the whole, deteriorating. When I bought the book I found out she was right! Apparently this condition always used to be known for the problems it causes to the nervous system but over the years the whole thing has got sort of twisted out of shape because of the links with the blood. B12 deficiency has also been strongly linked to motor neurone disease and there is an organisation in the U.S. (I think) which, based on real research, suggests that people suffering with it take as much as 25mg by injection PER DAY.
Anyway, because it's the holidays I haven't been able to try it yet or talk to my doctors about it. But I really do think this guy is on to something.
Best wishes for the holiday season (if I'm not too late)
This is so interesting,worked in a care home and a few of the residents used to have the B12 injections and with seeing the difference it makes especially with mobility and fatigue I have often wondered if B12 injections would help with ataxia.Will defo mention to my consultant.
The book (it's only an ebook) actually sort of confused me. Not because it's a confusing book, but because all the stuff I thought I knew about B12 deficiency was actually wrong.
For instance that it only affects the elderly and the blood and it's easily treated. It's actually, if you can get your head around it, none of those things.
Apparently when it used to be known as pernicious anaemia (this isn't what you think either) one of the main symptoms was ataxia and most people used to die of the neurological degeneration, not anaemia.
I was blown away and I'm still trying to digest it now. But it does give some lists of symptoms that many illnesses have in common and which in some way can be linked to the B12.
I think the motor neurone link was very interesting - although it's also known as ALS but I couldn't find a forum on here for it. Apparently it can prolong the lives of those patients by 600 days when given early enough. I had a relation die of it 15 months from diagnosis - so 600 days is a heck of a long time (and the treatment could be bettered in the meantime)
And it also gives links to current articles in medical journals about it - might be worth passing those to your consultant?