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)
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GeorginaB2
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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?
That is extremely interesting. I was diagnosed with a B12 deficiency a long time ago and received injections. B12 level improved and injections ceased. When bloods are done now, B12 seems ok. Goodenough.
One of the main problems seems to be, as happened with GoodEnough (and myself) is that doctors simply try and make the blood normal. However, from what I can gather this is not enough to make the nerves better - and, according to the book, they knew this back in the early 1920s.
I've been searching for the link about motor neurone, and the site comes up as ALS Worldwide - this isn't the original link that I found, but it more or less confirms what the book says. That you need a certain type of B12, by injection, and a lot of it.
So far, all of the B12 stories (and there are now quite a few of them) have been anecdotal only. There is no professional medical advice to back them up. So maybe somebody with medical knowledge at Ataxia UK knows the current medical-thinking regarding B12 can inform us?
Another long story short: Prior to ataxia diagnosis in 2015, I had been treated for what was a "simple balance problem. As I also take medication for an unrelated stomach condition, and this medication can also, very rarely, prevent the stomach from absorbing B12, for a while I took a B12 supplement (self-treated as I was living abroad at the time). When I finally had my B12 level measured, all was OK.
In the meantime, when B12 level is OK, my ataxia symptoms have progressed. VERY slowly in my case (the best that I could have hoped for actually). So there progression has nothing to do with B12.
But the original onset of the condition?
A question that will never be answered (in my case anyway). But B12 does seem to appear in for too many ataxia-related comments. Too many to be coincidental?
There is a condition called Ataxia with Vitamin B12 deficiency and it has similar symptoms to Friedreich’s ataxia. Testing for Vitamin B12 levels should take place at an early stage in the diagnostic testing as there is a treatment for this condition. In terms of treatment a referral to a haematologist is recommended. You can read more about it in the Ataxia Medical Guidelines (page 42). ataxia.org.uk/news/treatabl...
I am afraid neither myself nor the Research Manager at Ataxia UK, Dr Julie Greenfield, are able to add any further detail to this at the moment. However we plan to discuss the issue with our Medical Advisory Panel in more depth when we have a meeting in a couple of weeks.
I will post more detail when I am in a position to.
I have Freds Ataxia and read a book 2 years ago and it mentioned how the cyclists used B12 for energy before a tour and everyday. I was always tired and would nod off anywhere. I started taking the highest tablet there was and with--in days felt brilliant. I keep going all day (even looking after 2 and 3 year old grandchildren) I swear by it and it does work .
From what I can gather there is actually lots of evidence - but doctors simply aren't understanding it. It all goes back to this blood levels issue. There's a link to another recent paper (or two?) which are talking about it.
Again, when you talk about stomach problems, I had this - and it's not unrelated. The book goes into the fact as to how all the digestive issues and malabsorption are connected (not only to B12 but other stuff as well) - and apparently how these were all known to be connected...back in the late 1800s!!!!
Like I say, it takes some understanding, and I would think going over a few times, before it starts to sink in how important all this is and how it's all connected.
Without going in to have a look, I think the opening section tells us that what we thought we knew (know) about B12 deficiency, is actually a myth.
Hi Georgina. My "unrelated" comment was me simply relaying what I have come to believe, from my own conversations with medics in Scotland. Because my B12 level is *now* normal, malabsorption of B12 has been ruled out as a possible contributory factor of the *progression* of ataxia symptoms.
But it can never be ruled out as a possible cause.
And I should have been more specific in my message.
My self-administered treatment with B12 was in 2010-2011 (ish) - as I had made the stomach medication/B12maladsorption/B12-balance-problem link myself, and in a kind of "why not" way, had decided on the self-administered B12-supplement treatment route. And, importantly perhaps, it was an oral supplement only (I had read about intra-muscular injections, but these have to be administered by a medic - who I had no access to at the time).
And, also quite importantly perhaps (?), I have spinocerebellar ataxia. But since my B12 *blood* level when diagnosed (in 2015) was normal, B12 was ruled out as a contributory factor.
Thanks for the link to the book. I'll read it in-depth later, when I have a moment.
I know this is an old thread but have you had an active B12 blood test to find out if there's enough available to use in your cells instead of the serum whole blood test?
The B12 bloodtest reveals only the B12 circulating. B12 is utilised in the cells so only around 20% of your result reaches the cells where it is needed
Sorry Iain, It's probably me that didn't explain myself well - and again we come back to the "B12 normal" phrase - which I have a sneaking suspicion many of us have heard.
Honestly, it really is too confused to explain clearly, which is why the guy probably wrote a book!
But, apparently, one of the symptoms known to appear with the condition (when it was known as pernicious anaemia) was indigestion. And indigestion caused by low stomach acid, not high, and low stomach acid causes malabsorption problems. Back before the ataxia I had appalling indigestion - and for no apparent reason. I started taking apple cider vinegar which somebody recommended and I t improved (including reducing a grumbling tum). Imagine my surprise all these years later when I read in the book that apple cider vinegar is one of the things suggested to get the gut working properly again!
I've only read it over Christmas and tried to skim to get to solutions but constantly found myself going backwards and forwards. If you miss a bit, you don't get the rest!
Funnily enough - I saw a consultant neurologist just before Christmas (first time in 12 years) most of what she said was highly prescriptive (She's the expert at diagnosing Ataxias - I'm the expert at living with them, so I didn't pay too much heed to her pronouncements).
Her parting 'gift' was a blood test - I'm looking at the result now, yep: 'slightly low vitamin B12 level' not responsible for symptoms 'but will only make his neurological status worse'(?) - 'I would recommend that he takes a vitamin B12 supplement'..
I'm not expecting or wanting a miracle but it's got to be worth doing.
If you have neurological symptoms NICE guidelines state injections every other day until symptoms cease. You also need to take cofactors to make optimum use B12 injections. Please look at Dr Chandy website. I self inject every other day having significant improvements in ataxia symptoms I have coeliac ataxia. I no longer furniture surf.
To be honest the last thing I would do is take a supplement. From what I understand the supplement just raises the B12 in the blood and makes it look normal - but the nerve damage is still occurring.
I'm trying to explain it as I understood from the book, but it's really difficult because what doctors are doing now is wrong at every level.
For instance, and again without going back and double checking, the book referred to a recent study which said the B12 test could be up to 90% wrong - and most likely was.
So, your 'slightly low' B12 level, could in fact be very low. And bringing it up with a supplement, as Iain rightly pointed out, means you just get the 'your B12 levels are normal now," from your doctor. Which, again, means nothing because the damage could be ongoing because of the problems with the test and you could also already have got permanent damage from the low B12 level. To add insult to injury there is a section somewhere that says the treatment for blood levels and the treatment for nerve problems should be very different and that this was known a long time ago but forgotten.
Yes - gotcha. I'll speak to my 'normal' doctor about the best way to incorporate B12 into the system. I eat most of the B12 products every day, so it was a bit puzzling, but then I had a scan for a suspected hernia a few years back which I vaguely remember showed I wasn't absorbing food through the gut wall properly, I wonder if there's a connection?
I began suffering from ataxia nearly 2 years ago after head trauma. Every Dr. I've seen recommends B-12 along with folic acid. I take 1000mcg of B-12 daily now.
Without sort of going over old ground, I think the problem here is clearly that people/doctors are doing the same old, same old, in the mistaken belief that what they are doing is correct.
So what we are ending up doing is talking about B12 and the treatment in the 'old' context and many circles are becoming involved.
I think you have to re-educate yourself about B12 deficiency and then decide if what you are doing is the right thing to do - if you see what I mean?
I'm very interested in learning more about what you mean. I've just blindly accepted my Dr's suggestions without perhaps fully realizing that they may be incorrect. Please reply and explain what you mean further. I'm very curious.
I don't think I can explain, except to say that most things you probably thought you knew about B12 deficiency, you don't.
And neither did I - and neither, probably, does your doctor.
One recurring theme throughout the book is the belief that B12 deficiency is treated quickly and easily. The writer refers back to this all the time - because a B12 deficiency is not treated quickly and easily. It's only bringing the blood levels back that is quick and easy - neurological damage is a whole other ball game when it comes to treatment.
But what most doctors are doing is just treating the blood part and expecting the nerve damage to be repaired.
So from what I can see, we get identified as having a B12 deficiency, they gives us a bit and when the B12 level in the blood is back in the normal range they tell us that it can't be anything to do with the ataxia - but it still can be because the amount of B12 in the blood does not reflect how much is in the cells of the body.
There is a condition called Ataxia with Vitamin B12 deficiency and it has similar symptoms to Friedreich’s ataxia. Testing for Vitamin B12 levels should take place at an early stage in the diagnostic testing as there is a treatment for this condition. In terms of treatment a referral to a haematologist is recommended. You can read more about it in the Ataxia Medical Guidelines (page 42). ataxia.org.uk/news/treatabl...
I am afraid neither myself nor the Research Manager at Ataxia UK, Dr Julie Greenfield, are able to add any further detail to this at the moment. However we plan to discuss the issue with our Medical Advisory Panel in more depth when we have a meeting in a couple of weeks.
I will post more detail when I am in a position to.
I think at least one of the problems here is the test for B12 deficiency, which can be up to 90% inaccurate and also that it shouldn't be used to tell when I patient has been treated other than making the blood symptom normal.
It could of course say all that in your link, so I might be repeating what you already know.
If so though, I'd like to know why my B12 treatment wasn't different...
I've just had a look at the guidelines you mention and, yet again, it seems to be just saying to bring the B12 levels back into the normal range. Which is where it's all been going wrong.
I think the ALS people are on to something and they seem, at least in part, to correlate with the book: that you need massive amounts of B12 in injection form, to have any effect on nerve degeneration.
I'll admit that B12 doesn't appear to be saving the lives of people with ALS, but in some cases it is doubling their lifespan. Which is some going for the poor souls involved.
Everything I've read seems to always point to B12 blood levels being normalized until I read that book. And that just knocked everything for six. And it's backed up by research some of which is very recent.
It all seems to be a bit of a mess. And, when you read on here the people that are coming forward saying they too had a b12 deficiency, more 'coincidences' emerge.
...and I know I'm thinking out loud and that you've already said you're going to look into it. But in the book it said that some people with nerve damage, if they have gone untreated for a certain length of time, then that damage will be permanent no matter how much b12 is given.
Could it be that some people with ataxia are in this position? Like myself for instance.
wow I know that B12 was a major ppoblem with me, my neurologist gave me shots and I have to take it daily 1000mg and D3 1000IU it does make a difference I encourage you to take that B12!!!
Unfortunately there is a lot more to it. What causes the B12 deficiency for instance. Also what causes B12 deficiency also causes other deficiencies. This is why so many illnesses seem to have a lot of things in common. Such as the D3, iron, magnesium etc.
Also, for many people the oral supplements and certain types of B12 simply don't work.
So you can improve your situation not only by taking B12 but also by doing other things to improve absorption of all the nutrients.
I recently started taking a Methyl B-12 & Methyl Folate (B-9) supplement which is fairly strong. I have seen a great decrease in my peripheral neuropathy symptoms in my feet. Incredible and unbelievable!! How great it is to feel my feet again!! They used to feel like bricks by the end of the day. I was also just reading some articles on Vitamin B-12 deficiency causing ataxia. I am so glad that I saw your post and thought I would share my experience as this was new to me too. My ataxia symptoms also seem to decrease as well when I am sure to take it. BTW, my doctor did say to either dissolve in mouth or chew to get the full effect. If just swallowed whole, stomach acid does interfere with its effectiveness. I bought mine on Amazon, so it was reasonable in cost. B-12 shots have done wonders with ataxia symptoms per the articles I just read. Please let me know if anybody else has any effect to this as well. We could be on to something.
AFTER I wrote this, I read some of the other posts. I should clarify that I had to take this strong version (1,000 mcg which is 41,570% of daily dose) for a month to notice the difference in my feet. It did not happen overnight. I have had the neuropathy for almost 2 years now. And, articles did say that blood levels and nerve damage were 2 different things. However, I have also read that nerve damage can be reversed to some point (maybe not completely) with the B-12 shots, BUT may depend upon how soon they are started after symptom onset. As for me, I am still going to take them as I do see a difference in my symptoms, and have not had my blood checked recently for those levels. I will soon though. For anyone interested, the brand name is Jarrow. And, according to some of the articles, you can't really overdose on B-12 like you can on other supplements. I know that shortages of Vitamin D and Magnesium can also be detrimental. Please don't shoot the messenger here. I am just reporting on what I've read and experienced.
I suffer from Ataxia. I found out by myself that B12 injection every week for 6 months makes me feel a lot better. It was renewed again after 6 months. I did this for 3 years.Unfortunately I had to stop it because of the pandemic. My symptoms became worse again. I wanted to start it again but my doctor told me that I must have a negative blood test for B12 in order for him to be able to prescribe it.
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