Family Support - or not...?

[Poppet11]

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.

[MariLiz]

Hi Poppet11, this really gets to the heart of the whole issue! How do you get through to doctors or anyone to make them really understand? I think we can feel so isolated, it's a bit like banging your head on a totally unyielding brick wall!

Good luck with everything.

MariLiz

[Poppet11 in reply to MariLiz]

To be ill and be ridiculed for it, is a terrible thing.

No matter which stage this illness is at - and there are many stages - patients have the right to have the problems acknowledged.

I know I've just replied to Flygranny in another thread and tried to explain to her that the Fog is just the start - but I don't mean to trivialise her experiences of it, because the Fog in itself is terrible, but it's probably a case of because that is her experience of b12, she presumes it's all our experiences of b12. So many stages, so many presentations, it boggles the mind.

But it also causes us some confusion.

I've said before that we view this illness from our experience of it - and there are many variants and stages.

That's why to me getting the neurological aspect recognised is very important and getting the general progression of the illness is very important. We have the fog at the beginning and the anaemia at the end - and a whole world of Hell in the middle that gets little attention.

[Hidden in reply to Poppet11]

I do not know about others but there is also the patient who just wants to be well and will try hard to ignour any evidence to just fight on, implying all is well. I know I am guilty of that one some times, Marre.

[Poppet11 in reply to Hidden]

Yes. There is that aspect of self denial that you deny the injuries - but when you do need help and recognition it should be there. I think many of us do try to perform to the best of our abilities even though our abilities are less than they used to be!

[Hidden in reply to Poppet11]

And it is very difficult to tell what's causing what and how much is just aging I think. My family and friends are more into pushing me to go to GP, they would ask me when is your jab due, or you need to jab up or you need to really go and see a gastro. But I suppose my mistrust of anything medical is borne out of initially having been fobbed of with its all in your mind, do not eat convenience foods etc. And having more family members on B12 treatment means we all tell each other when we think their jab must be due, when one has done something terribly vacant, or can not find the words (or the dish clothe/ keys) or is dangerous in the car. Hubby miss-uses my PA when he wants to get out of an invitation, saying I will not be up to it, whilst its more he does not want to go. People's experiences are so different.

[Poppet11 in reply to Hidden]

No, I don't think so. We aren't talking minor forgetfulness or vision deteriorating slightly - we are talking constant parathesia and neurological problems - partial paralysis and muscle wasting isn't a natural part of getting older - unless we are really hitting the big numbers!

But like you say, people's experiences are so different!

[Leilanilea in reply to Poppet11]

One Rapid Response to the BMJ article states "Vitamin B12 deficiency can be easily missed, because its symptoms may be clinically indistinguishable from those of dementia, [6] Parkinson's disease, frailty of old age, diabetic neuropathy, alcoholic central and peripheral neuropathy, and mental illness. It needs to be diligently sought, and treated if there is any clinical suspicion, even if serum B12 levels are within the reference range."

The (6) refers to Rietsema WJ. Unexpected Recovery of Moderate Cognitive Impairment on Treatment with Oral Methylcobalamin. Journal of the American Geriatrics Society 2014;62(8):1611-12 doi: 10.1111/jgs.12966[published Online First: Epub Date]|.

I wish I could access this but requires membership or payment.

[Poppet11 in reply to Leilanilea]

If you could see me for the first hour in a morning, I look like a Parkinson's patient. Dependant on the day, I have tremor from Hell - yet no one believed me, even when I was failing neuro exams.

Now, because I've never been given any rest, the tremor and problems I have in the morning are extending throughout the day.

I think if I hadn't made such a 'fuss' about it being b12 related, I would have been diagnosed with something else prior to now.

What, I'm not sure, but I don't think they would have ignored the problems and attributed them to some form of 'hysteria.'

I think once doctors move away from the fact that anaemia precedes neuro symptoms and accept neuro symptoms can be indicative of b12 deficiency no matter what the blood tests say, then things will improve.

It was that one misconception that was distorting the whole of the picture.

...and I'm just laughing because you'll want to slap me. I pointed out an error on one of the medical reference sites and as a 'thank you' they offered me a freebie membership. I was thrilled. Then lost the email and couldn't remember the site!

[Leilanilea in reply to Poppet11]

Oh No! speaking of reference sites, do you have membership in BMJ? If not, have you ever bought their articles? I'm confused by their information about having information available for specific amount of time; can it be downloaded to my laptop? thanks

[Poppet11 in reply to Leilanilea]

You can have a free 14 day trial - but mine didn't go that smoothly. They had to extend it so I could get in. They don't pressurise you to join at the end of the 14 days though, they just send you one email.

[Leilanilea in reply to Poppet11]

Thanks...still wondering if they allow download to my laptop during trial?

[Poppet11 in reply to Leilanilea]

Well my main problem was logging in not downloading but I copy and paste most stuff anyway if I can't download.

If you try the trial make careful notes of everything you fill in when you apply - I don't know what I did wrong, but I did something...

[Leilanilea in reply to Poppet11]

Thanks

[Jcwg]

Hi, please excuse my ignorance , I was diagnosed 18months ago and buy methyl privately, I was under the impression if I take enough b12 I would perhaps stay the same or even get a little bit better, by reading comments am I right in thinking there is a good chance we all can get worse as time goes by regardless of becoming b12 junkies ( some one else's comment,n I liked it) x

[Poppet11]

It depends what damage you sustained when you were deficient and how much care you got when the damage was acknowledged ('scuse me while I stop laughing! 'care and acknowledged don't really go in the same sentence when it comes to b12 deficiency)

The illness progresses in stages and certain stages are fully reversible. Later stages may or may not be fully reversible.

Research has shown that when people who have permanent neuro injury from an untreated or undertreated b12 deficiency get the 'correct' treatment then they usually improve by 1 stage.

Since most of us don't get the correct treatment on the NHS (which should be according to each individuals needs) and get zero in respect of care, then they struggle not only with stopping the progression of symptoms but obviously with repairing any damage already sustained.

I put a thread up about a week ago with regard to the stages of b12 deficiency by V Herbert, if you have a peek at it then maybe it will resolve some of your concerns - if you buy privately then at least you've managed to overcome the problem of the 3 monthly jabs and have the first hurdle sorted!