The recent article in the BMJ has highlighted the main problem relating to b12 deficiency - that of the fact most people (whether clinicians or not) did not really understand b12 deficiency. They thought it was a blood condition and the neuro damage followed. They did not understand that it was a neurological condition which may produce anaemia.
How this situation develops will be interesting to follow because it is clear from the few comments relating to the article (particularly in the CME section) that doctors were really not aware of the seriousness of this illness. One actually makes specific reference to the fact it appears they have been undertreating neurological damage - and treatment is only briefly referred to in the article.
So the pieces are dropping into place.
But another factor relating to this misconception, I feel may haunt many of us - I could be wrong, of course - but that is of the attitude of family and friends. There can be no doubt that most of the public believed exactly the same as the doctors, that b12 deficiency produced a problem with the blood - there are precious few discussions on the net that would indicate otherwise. However considering what really happens with the illness progression there can be no doubt that many people attracted to forums are there because they have permanent neurological damage - they are not only seeking support, advice and treatment but also asking how to get their damage acknowledged.
Families, who believe a b12 patient receiving treatment is no longer ill providing they keep blood levels up, are in many cases, I suspect, causing patients more suffering due to the constant trivialising of the patient's injuries. This results in a constant state of turmoil for the patient, who has, because they have no option, to carry on in the capacity that they did before they became ill - whether they are truly physically capable or not.
I suspect that the feelings of isolation are much more prevelant than most first realised. The lack of acknowledgment patients receive after suffering serious nerve damage from a potentially lethal illness may cause extreme emotional anguish.
Maybe, the article would not only help medical professionals understand but also for families to understand? To explain to them that the doctors were getting it wrong, that the problem with your blood does not come first, and that physical injury comes first - proven by a UK research team, and that damage may be permanent particularly if you do not receive the correct treatment and care, may just sway matters a little to benefit the patient.
I have written and talked to many about b12 deficiency over the last 4 years. I have talked myself blue in the face and been patronised until I wanted to scream. Yet I saw the other day what happened when I told someone that a UK research team were backing up what I was saying (I had done work on the metabolic pathway previously to try and explain what happens - and got the patronising thing) and they were stopped in their tracks!
Suddenly they were interested. What I was saying had validity.
It will by no means right my situation, and believe me, I have been wronged. But to be able to say that you have scientific evidence to prove that you have been injured, goes a long way to making people think twice.
Article about strange symptoms of B12 deficiency
B12 deficiency myelin sheath
Vitamin B12 deficiency from the perspective of a practicing hematologist
