I've actually got ataxia but someone suggested mentioning this here which is probably a good idea.
Before Christmas someone mentioned to me a new book: B12 Deficiency and Chronic Illness by Mike Newman (it's only Kindle). It's a complicated story but she has CFS which she now believes is linked and that it also talks about symptoms including ataxia.
Without going into details, which are too complicated, it seems that most doctors are getting B12 deficiency all wrong and that all they are doing by raising blood levels is making the blood look normal but the nerve damage (and other stuff) is continuing - or it can already be permanent.
Although there is lots of interesting historical stuff in there, which tells you how the illness used to kill most people by nerve damage rather than anaemia, it also gives lots of new stuff. This includes the fact that ALS International are recommending to their patients (and have done for several years) that methylcobalamin is injected in massive amounts on a daily basis. In the UK we call ALS motor neurone. This, apparently, is extending the lives of some of the patients by up to 2 years.
There is also lots of other stuff talking about symptoms, gut disorders and other deficiencies but much of the information it says was known a long time ago - and it's just that doctors now have lost the information.
If you think it might help you then take a peek - also, if you know anyone with ALS then point them in that direction. For those who don't know this is a terminal condition and anything which will extend the lifespan of patients must be a blessing.
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GeorginaB2
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It seems to occur in many people with neuro illnesses - the ataxia is the same. But then we just get B12 levels raised to normal and this, according to the book, simply isn't anything like enough to tackle the nerve degeneration. And it says that this was known right back in the early 1900s.
The book also gives a quick mention to nitrous oxide but only in a list somewhere of other things that can aggravate the problem.
GeorginaB2, it's Fancy1959, welcoming to this wonderful chat room. It always is helpful to suggest reading materials and news items to the members of this chat room. We do believe though that we let all diagnosis be done by our neurologist and the doctors who support us. As Lois stated the testing of our B12 levels are part of our initial diagnosis in blood work. And I also believe it is checked in somewhat regular intervals when we have blood work done for various other levels such as liver enzymes or kidneys functions, etc.
I hope the information will be of help not only to patients but also their clinicians. I know that part of it gives a link to a recent research paper in the BMJ which provides lots of information for doctors explaining the current problems with tests etc.
So, it's not a question of challenging doctors in any way, but I suppose, particularly when it comes to the research paper, making sure they are up to speed. I've learned since the Christmas break that my doctor didn't know about it and he was very interested - and I might get injections reinstated as a result.
I guess it's just a case of working together and then providing feedback?
I'm not absolutely certain but I don't think they differ from any other illness.
You've either got normal or low levels.
The problem seems to be that even if you've got 'normal' levels, they might not be normal at all. It depends on what kinds of B12 you have floating around.
It would seem that there is no way of saying you have enough B12 or not.
Simple b12 levels may be falsely reassuring. Consider MMA if low normal (300s) b12 level. Some cannot metabolize b12 taken orally due to acquired deficient intestinal issues and may need injections b12 or possibly can get by with oral mega dosing (pernicious anemia)
GeorginaB2 Interesting. Thank you. I suspect my B12 level was always low but wasn't tested for it specifically until the workup preceding diagnosis. At that time the neuro said the level was extremely low. She started me on daily methylcobalamin injections(for a week), then weekly injections(for a month) and since then, monthly injections (now more than 6 years). Maybe coincidence or not, but I have had no new lesions since diagnosis.
That is interesting. Methylcobalamin by injection is what the ALS site and Japanese scientists recommend. They say don't touch supplements or any other kind of B12.
What they've done is actually a fine example of letting patients tell doctors what works. Patients started reporting they felt relief from symptoms and they went with it and started widely recommending it to ALS patients. This illness though is terminal, and anything which would extend lifespan was welcomed. And its the only thing being shown to do it.
BUT they recommend 25mg by injection per day. And, I think it said it only works if it's been given at the commencement of the illness.
From what the ALS society have done the Japanese embarked on studies which showed they were right.
Brilliant work.
But the book said the same thing. That it was always known that once you'd got the blood levels right then you had to give enough to reverse neuro damage. Not in those exact words, but you get my drift. It also said that a number of patients would always be permanently damaged - which is what the BMJ research paper said.
Seems to me that it's been done all wrong at the moment.
GeorginaB2 Well in my case, there is permanent neurological damage, and every time my immune system is challenged, I lose a little ground... but some of the lesions first seen on MRI show signs of slight remyelination...and I have been on no other DMTs. So though I don't feel affected by the B12 injections, perhaps they play a role in the very slow progression of my MS.
Well, yes. And, if you are 'only' getting injections once a month, then maybe that still isn't enough? Just going on what the historical information was and what the ALS and BMJ are saying?
It mentions autoimmune conditions being linked as well - and loads of other stuff such as leaky gut, indigestion, overgrowth of gut bacteria. And then it goes on, not to list, but to mention a lot of conditions which all seem to have this batch of symptoms in common but present as other illnesses.
GeorginaB2 I agree that a monthly injection may be insufficient but I am not knowledgeable enough to argue otherwise. It has been my experience that most physicians are firmly convinced that their training outweighs any knowledge I might have about my own body and perceptions. It may also be that most of my physicians until recently have been male.
I have several other auto immune conditions and know that there are interactions between and among them. When one briefly flares, it is often followed by a different flare from a different condition. I learned long ago to pay attention to these episodes. I also believe firmly that gut bacteria (especially those that produce neurotoxins) are more involved than the medical community has consensus on. MS may be my most visible and debilitating symptom, but I think it is folly to see it as separate and distinct from the other manifestations that something is out of balance in my system. That said, well into my 7th decade, I also see that whatever is out of whack in me, is more or less my normal. It seems counter productive to seek a variety of narrow specialists with their often conflicting treatments and face the possibility of unforseen interactions. Probably there is someone in the world who could look holistically at what is out of balance with me and be more definitive, but as I do not have the resources to undertake this search, I intend to go on as I have: understanding my strengths and limitations, making careful decisions about treatments, and avoiding most disease modifying therapies for MS.
GeorginaB2 I agree that a monthly injection may be insufficient but I am not knowledgeable enough to argue otherwise. It has been my experience that most physicians are firmly convinced that their training outweighs any knowledge I might have about my own body and perceptions. It may also be that most of my physicians until recently have been male.
I have several other auto immune conditions and know that there are interactions between and among them. When one briefly flares, it is often followed by a different flare from a different condition. I learned long ago to pay attention to these episodes. I also believe firmly that gut bacteria (especially those that produce neurotoxins) are more involved than the medical community has consensus on. MS may be my most visible and debilitating symptom, but I think it is folly to see it as separate and distinct from the other manifestations that something is out of balance in my system. That said, well into my 7th decade, I also see that whatever is out of whack in me, is more or less my normal. It seems counter productive to seek a variety of narrow specialists with their often conflicting treatments and face the possibility of unforseen interactions. Probably there is someone in the world who could look holistically at what is out of balance with me and be more definitive, but as I do not have the resources to undertake this search, I intend to go on as I have: understanding my strengths and limitations, making careful decisions about treatments, and avoiding most disease modifying therapies for MS.
I think you make an awful lot of sense. But, what I also think (and actually this point is clearly made in the book, so it's not 'my' thought) is that doctors are only as good as the latest research. For example, I suppose they could learn about B12 when training, but then 30, 20 or even 5 years later, research comes out which changes the whole picture - and doctors have got to be sure they are aware of these changes.
So it's no good, for instance, a doctor saying he gives an injection once every couple of months, when the research is out which says injections should be given every couple of days. THIS IS A MADE-UP EXAMPLE.
It might not seem fair, but then again I suppose it's the nature of the beast. So really, if you go to any doctor and say, I've read this new research and I think it's of interest in my case, would you please take a look, then they should, in theory, welcome you passing on that information.
I know I've had the debate before, a long time ago, when people say that doctors are referring to guidelines. But I also know that at the time I was told by those who produce guidelines that doctors must be aware that that is exactly what they are: just guidelines and each patient must be treated according to their needs. This was not to do with B12 deficiency it was something else but the general theme applies.
They are not rules, they are guidance and doctors should be using their own judgement based on the latest information and each the response of each individual.
Can you see the words, 'taking responsibility' floating around in there without being said?
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