I do not have a diagnosis of PA, but of primary progressive MS, however I thought I'd try B12, as I am offered no other treatment, and much of my symptoms, and the way it developed also seemed to fit subacute combined degeneration. (Low serum b12, high MCV and mch, symmetrical numbness starting from big toes, moving up my legs, MRI 4 segment diffuse inflammation of spinal cord and hydromelia, in cord, cervical and thoracic, brain clear).I have had no new symptoms for 2 years- started sublingual b12 then and gradually upped my dose to 2 x 5000 tablets daily a year ago.
My feet and hands have been like blocks of ice for several years, way before my diagnosis, but I understand that one of the things PA or other b12 deficiency does is make your blood too big to fit in the small capillaries in your extremities.
So, a month after doing 1000 sub cutaneous injections, (alternate days for 3 weeks, then 1 weekly so far), possibly getting more of it in me as I gradually get better at the jabs, I am much less stiff in arms and legs and for the last couple of days, my hands and feet are generally warm, a couple of times actually hot. It is very hard to be subjective; I was not expecting miracles, but I can't see any other variable to explain this? Even if this is the only change, I am grateful.Am I grasping at straws?
Sian
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Sian5
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What we have is a huge knowledge gap relating to what b12 deficiency actually does to the human body.
It causes DNA dysfunction and vascular problems, it causes demyelination of nerves.
Untreated it kills you - it doesn't matter if they call it MS or Blindymartyrgrat syndrome. It still causes permanent cellular and neurological damage and it ends in death if it's untreated or undertreated.
The ignorance of the medical profession has seeped into the mindset of the public. They 'believe' in MS as a diagnosis of a neurological disorder, they do not 'believe' in b12 deficiency because they are 'fed' the knowledge that it is a blood disorder.
Do you have MS or neurological damage resulting from a b12 deficiency - or do you have MS and a concomitant b12 deficiency - I don't know.
What I do know is what b12 deficiency does and if you have it you need the correct treatment in an attempt to reverse the above damage. Sometimes it is reversible, sometimes not (depending on how long it has gone on for).
I don't know if that answers your question ... but if you are still looking at b12 deficiency as a blood disorder which is easily put right then the above info should help dispel that.
I know a B12 injections warms me up, same for daughter, so no you are not imagine thatone. Why I do not know, just very glad it does! Marre.
My hands, feet and body were freezing cold about 18 C before I received regular injections. But I, too, feel warm after having the right amount of B12 inside of me.
Symptoms of B12 Deficiency show a huge overlap with other problems - including MS, and it does get mis-diagnosed.
However, it's also true that some MS sufferers respond very well to treatment with B12 - this could be because they have both a B12Deficiency and MS or it may be that the role B12 plays in remylenisation of nerve cells helps reverse some of the damage of MS, or hold it at bay.
Have you read Could it be B12? (Sally Pacholok)? - it has some really interesting stuff on B12 and MS - and lots of references to studies if you wanted to follow up some more.
My father has ms and believes he feels much less fatigued on a b12 supplement. I'm also b12 deficient, although I haven't pernicious anaemia, all the results were negative. Still a strange one.
I've got to be honest there is one word in your comment that really worries me - he 'believes' - why on earth would you think he only 'believes' it rather than it really happens?
The suggestion is that you think it is in his mind - that the b12 is a placebo effect.
Why is it 'strange'
All that you are saying indicates to me that you don't really understand b12 deficiency and what it does. You don't understand the seriousness of the situation (for you and your father)
Excuse me if I sound tetchy, but I sat in front of numerous doctors as I lost my physical functions and listened to them say things like, "If you 'believe' that you are ill" and "if you 'feel' that you are ill" - The implication being that it was all in my mind.
If any of them had bothered to read my blood test results they would have seen the serious b12 deficiency sat right there and have given me treatment instead of my life being tipped into the proverbial toilet.
If he says it makes him feel better - do not doubt him - just go out there and learn about the illness.
Neither his doctor or neuro will give him injections, his levels were 200 odd, I can't remember exactly but it was 'within the range' his neurologist pretty much said there's no scientific research.
he's just on a holland and Barrett ordinary b12 tablet and he takes my bcomplex too.
Pa is autoimmune as is ms, so I always wondered if there was a link there. His gp said that you can be more likely to inherit any autoimmune disorder, it just might not be the same as his. But I have no autoantibodies so there might be some other weird link.
He has relapsing and remitting, started with optic neuritis which came back eventually when he was early 30's.
My injections are kind of DIY, my sister in law and another friend do them for me,I have a doctor who let's me fire away fortnightly, so we should try dad with one just to see.
Sorry to crash your thread Sian! Hope you get even more benefits from b12.
Yes, I know they are being termed autoimmune but when it comes to the actual deficiency of b12 (I'm talking b12 v PA) what difference does it make to your situation?
... and let's go back on to this bit - because what I am trying to do is to clarify things for you and to do that I have to understand where you are coming from.
For the moment forget about the significance of autoimmune. Forget about PA. Forget about anaemia. Start from scratch and this is why:
A deficiency of b12 affects several metabolic pathways.
On one pathway, the pathway that includes DNA synthesis, B12 is needed to convert homocysteine which in turn ensures DNA synthesis. If there is no b12 then homocysteine can't be converted and DNA dysfunction takes place. This means every cell in the body can be affected. Included in that, of course, are the blood cells - but not only the blood cells. This dysfunction of the blood cells can produce anaemia.
In actual fact it should produce anaemia at the end of the process - but this anaemia can be masked or hidden by other factors. For instance if you have an iron deficiency or if you take a folate supplement.
So, in many people this isn't apparent in blood tests. Meanwhile all the cellular dysfunction is going on in the background.
Now can you see why I told you to forget about the anaemia?
However in today's society there has developed the belief that the anaemia is the important factor and it is very difficult to understand where each clinician is coming from.
Many believe that b12 deficiency affects the blood and only the blood. Put the blood right and everything is okay.
Others believe that the anaemia comes first - stop or reverse the anaemia and the neurological damage is prevented.
Others still know that the anaemia is at the end of the line but then they simply treat the anaemia and presume all the neurological damage is reversed with a few simple jabs. When in fact all they have done is treat one symptom.
On another metabolic pathway b12 is needed to enable remyelination - but everyone is waiting for the anaemia! And, even if it appears, they will treat it very minimally and then presume the neuro damage is reversed.
I hope this bit has helped in your understanding.
B12 deficiency is not the poor cousin of MS. It is no less significant. They should both be as scary. And in the UK there is a distinct lack of doctors who find b12 deficiency scary.
I honestly don't know what to say to you poppet, other than that I feel a bit offended and upset. Your second reply didn't show up until just now so I actually didn't see it when I replied earlier. I feel judged from one word on an Internet forum from someone that I don't know at all. I'm 24 and actually very close to my dad, it took him 3 years just to get an ms diagnosis. He had balance, memory, sensation problems, he couldn't taste right and had double vision as well as migraines. His gp told him it was all in his head and he should go to an optician about his double vision. So yes, I actually do believe him when he tells me how he is affected by his ms and anything he takes to feel better.
I'm deficient in b12 and my dad has an illness which attacks the myelin b12 helps make, that's what I meant when I said its strange, as in it can't just be a coincidence.
I have read quite a lot about ms and b12, maybe I haven't expressed myself very well.
I've been going to the doctor since 14 with all my b12 symptoms I didn't get so much as a blood test until 10 months ago, I know what it means to have doctors look at you like it's all in your head.
Anybody who feels better with B12 treatment for what ever reason and what ever the B12 product should keep at it as in the end it does no harm and can do a lot of good. Am sure what your Dad feels is right, is right for him, what you feel is what only you know does you right, no other person can feel that.
What we have here is a situation where we 'believe' we understand MS - it is, after all, a 'professional' diagnosis. It is a diagnosis which has validity.
Conflicting with that we have a complete lack of understanding about b12 deficiency - including clinicians.
So, let's look at the first part - the bit that you're upset.
If you try and understand that many people on this forum are still ill - we still have physical damage resulting from b12 deficiency. Many have no acknowledgment from the medical professionals that we are even ill. We are, in effect, ridiculed not only by clinicians (in all their guises!) but in many cases by family and friends - we are simply not believed.
Yet in many cases we have identical symptoms and injuries to MS patients who are believed and treated with some level of compassion and understanding.
I actually believe that many b12 patients are hit with a bigger psychological impact than many patients who achieve a diagnosis in other neurological illnesses simply because they are treated so badly.
Not only are we fighting for better diagnosis and treatment but we are fighting to get our injuries acknowledged.
So please try and understand, we can sometimes get upset and offended too.
Okay, now let's look at the B12 and MS thing.
I don't know if you are aware but in the US today one of the top 5 medical malpractice suits is for b12 deficiency misdiagnosed as MS.
That should give you some indication of not only how often b12 deficiency is overlooked but also of the damage it causes.
I'm not saying rush out and sue someone but I think it's pretty relevant that this misdiagnosis has got into the top 5 in the US.
Most of the studies done on the effects of giving b12 to MS patients fall into the following categories:
a) They don't give b12 until the physical effects are well advanced (In b12 deficiency when symptoms get past a certain point they are irreversible)
b) They don't give enough b12. They give standard protocol amounts which, if you go by this forum and others, aren't enough to keep even the initial symptoms of b12 deficiency at bay.
c) They measure the 'effectiveness' of the treatment not by looking at the symptoms but by taking blood tests. Which we now know are pretty much useless after treatment commences.
There may be out there somewhere a study which a) Includes patients who are in the early stages of MS, and b) Gives them regular megadoses (preferably by injection) and c) Monitors not only the haematological indicators but describes indepth symptoms and how they are affected.
If you've seen one, please feel free to provide a link - I'd really like to read it!
So we have a situation where clnicians don't understand b12 deficiency. If they don't understand b12 deficiency (which causes many neurological symptoms) how can they rule it out before reaching a diagnosis of MS?
Let's take your dad as an example:
How did they rule out b12 deficiency as the cause of his symptoms before reaching a diagnosis of MS?
(Taking into consideration also that b12 deficiency is much more common than MS)
I agree with Marre, I am just trying this to see if I can benefit in any way. I do have low 'normal' b12, some blood indicators like high MCV, and MS uses up b12 in a constant remyelination. There has been lots of research that doesn't prove it 'cures', MS, some indicators low b12 might contribute to developing MS, (along with a myriad other things), so for me, anything else 'wrong', Like low b12, that I can easily relieve is at least helpful and not harmful.
Having done sublingual for over 18 months, And as I had long term diahorrea, now lessening, I figured bypassing my digestive system to get more than the 1% passive absorption in was worth trying. If all that happens is my hands and feet stay warm this winter, that is still a result! I hope all of you have some benefits too.
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his neurologist pretty much said there's no scientific research. 
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