Having a Conversation about B12

Maybe a little bit deep for a Sunday evening I know but I just realised what I yearn for:

A proper conversation about how b12 impacts our lives.

Don't get me wrong, I've had lots of 'conversations' about b12 deficiency in the last few years - trouble is, and it took me far too long to click on, in most of them I now realise we were talking at cross purposes.

Now I'm more attuned to such conversations, whether they be with doctors, friends, or simply acquaintances.

You get the smile, and nod of the head in agreement.

...and that is the start of the slippery slope!

What you find follows is that people start to say things like:

"If you work harder you will take your mind off it"

"Oooh, I know. I have that too (This usually applies to having vertigo/balance problems and is pronounced both before and after they send you photos of themselves on the highest, whizziest ride at Alton Towers!

Then there is the "why don't you move on from this?" pronouncment. A clear indication they think you are just a whining little weasel and actually don't understand the illness and any damage you are left with.

Or how about, "Yes, but you only had a b12 deficiency, didn't you?" Another clear indication they really don't know what they are on with.

Obviously we have the big one that I personally, if I were in charge, would make a criminal offence - "But your b12 levels are normal now." Bring back hanging for that one and I for one would not oppose it.

But the biggest indicator relates to what they don't do. They don't ask questions. They don't ask which bit of you isn't working. They don't ask why the bit of you you say isn't working, isn't. They don't ask if your eyesight has improved or by how much. They don't ask you if you still have tremor or if anything in particular triggers it. They don't ask if the dementia their granny had could be b12 related. They aren't worried if they should get b12 deficiency because they don't understand that b12 deficiency is related to these conditions and think it's a blood condition and it can be rectified at the drop of a hat.

Oh and there is no urgency when it comes to getting treatment - even for themselves.

As b12 patients we are extraordinarily isolated. We are extraordinarily patronised. A very unpleasant experience to go with an unbelievably unpleasant and dangerous illness.

Ooh, and just to end. To show how far cross purposes can stretch - I spent a year talking to someone (not constantly, obviously) about the neurological damage b12 deficiency can cause - turns out she thought neurological meant psychiatric. She's just spent a year telling everyone how I've 'admitted' to having psychiatric problems. Yep, I've got psychiatric paralysis of the quadriceps.

Be careful out there, people!

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  • I looked at Patient.co.uk on B12 a few days ago and was struck by the statement in there that

    "There is a small group of people with vitamin B12 deficiency who report that their symptoms come back (recur) before the usual three-monthly treatment dose."

    I was told that my B12 was low as a result of a blood test in hospital in 2012. Since then I've struggled to find information about what that actually meant ... and come across a few people who share the affliction in real live as well as people on line ... and I have yet to find anyone who actually DOESN'T report that symptoms come back before the three monthly dose (or before 2 monthly if they are on 2 monthly) ... even though most don't have the energy at that point to do anything but sit and wait for the next dose.

    I find this a frightening condition on so many levels, not least because of the way it is 'treated' and you feel left at the mercy of medics who generally don't seem to have much of a clue ... and you are at their mercies. I'm lucky enough to have been able to afford to supplement myself but I feel huge concern for others. It took me well over a year to figure out how to do that but my life has so been turned round. Suffered from depression for years and now it seems to have gone - leave alone the problems with balance, thinking and just trying to live a normal life. Frightening to realise that I would probably have killed myself by now if I hadn't started treating myself.

  • Yes, but how many of the patients who report their symptoms returning actually get those taken seriously by anyone in authority? They don't. I've never met a nurse yet who hasn't said, "Why do b12 patients always come back and ask for more injections?" (slight patronising smirk on face)

    Here's a thought - why don't you report this issue back!

    The frightening thing is the medics don't have a clue and that's why the public don't have a clue.

    Rarely does a patient get returning symptoms recognised relative to the fact that the UK has a pathetic treatment regimen relative to the rest of the developed world. And even rarer does a patient get neurologic injury recognised as occuring when they were deficient.

    Like you, I find the whole thing frightening - and we could drive ourselves crazy worrying about people who don't have access to the net, haven't got money or access to supplementation, and for me, wondering what nightmares people must have lived and died through prior to the internet and supplementation being available.

    It's a completely bizarre situation.

  • Wow well said! I couldn't have put it better myself!

    When I say I've PA I just get the delayed...."oh really?" And a quick move onto any other subject!

    Sometimes i even begin to question myself......"it's not serious!" - yeah right!

    I wish we were taken more seriously too, but I'm not sure it'll happen quickly when even the doctors don't appear to know much about it!

    It's nice to dream though....;)

  • Yes well, you can really beat yourself up if you know that back in Murphy and Minot's day you would have been hospitalized, given bed rest, a very well balanced diet, physiotherapy and as much b12 (liver treatment) as you needed to get as well as possible.

    There. Now don't you feel better knowing how your illness is handled in the 21st century?

  • Hi

    I know what youfeel like. People get tired of you saying you feel unwell. They just expect you to carry on. I seem to struggle with low serrum ferritin but end up having to treat myself blind as every time I go back to the gp saying I am tired , have a pounding heart, feel wobbly and my throat feels weird she says I am depressed. I lead a physically active life and care for others but some how am just expected to quietly get on with it. I do get my b12 monthly which is good but it does not solve everything. My neuro symptoms return with tingling.

    thank you all for being out there to listen.

    gillsie

  • Here is a conversation I had with my doctor:

    Me: 'Why is there a constant shortage of cobalamin in Irish pharmacies?'

    Him (with a smirk): 'Oh, I think a lot of people get addicted to it.'

    I wish I could say that, since, I have had improved conversations with Irish doctors and nurses. Instead, as my injections are too far apart (3 months with my current doctor), I wind up having to supplement my 'addiction' myself.

  • Hello Poppet! I was going along with that wholeheartedly...then I realised it's you, Poppet! You are like the matriarch when it comes to B12, I think you should win a medal for your research...and knowledge. Ok, I'm taking methylcobalamin, 5 days now, how long do you estimate it will be before it actually kicks in? Lynn

  • Everyone appears to be different. I find this a very interesting aspect of the illness - have you noticed any difference at all? And are you having injections or taking oral supplements?

  • change.org/p/ian-hudson-ple...

    I'm sure you have signed this... :-) I apologise if this a repeat post :-)

    PS I hear you :-)

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