Rumours of impending doom

[janetmenzies]

Had my last loading jab this morning and continuing to feel much brighter, though still easily tired. Interesting conversation with my doctor who summed up the deficiency mood as "sensations of doom" which I think really captures what it feels like. In the interests of balanced research, I would love to hear from anyone who didn't have that feeling. Eg you may have been diagnosed by chance as a result of routine tests or tests for something else, so you were B12 deficient, but didn't experience "sensations of doom." Even just a quick line, "no doom", would be helpful. I don't want my sample to be self-selecting, as it's only human nature to reply if you did feel it and not bother if you didn't!

Good health to you all.

[Foggyme Administrator]

Hi Janetmenzies. Personally, I'd steer clear of terminology that talks of 'deficiency mood' and 'sensations of doom'. I think this 'relegates' the symptom to the domain of 'psychological impact' (for want of a better description) and makes it all to easy to then have this symptom ascribed to anxiety state or depression...an all to common occurrence that is something we all fight against. (Though depression can be, of course, one symptom of B12 deficiency).

For me, this is not an accurate descrition of my physical body breaking down. The lack of B12 is, quite literally, causing my body to die. I feel like dying (on occasion) because, without B12, I AM DYING. This is not 'a sensation of doom' but a harsh biological / physiological fact!

Really sorry if I sound pedantic but if you are going to write about this, you may well 'shoot yourself in the foot' if you adopt this terminology. Might just play in to the current mistaken PA / B12 deficiency 'picture' that prevails with out-of-date, ill informed GP's.

But that's just my thinking 😀.

Would be really interested to hear your thoughts....and the thoughts of others.

[scorpiojo in reply to Foggyme]

I think that people should be very wary of what you or others may have in mind... Because whether or not people say what you would like to report, it's a fact we are passed off as varying states of nuts or depressed (it's a wonder we are not all classed as hypochondriacs) ... Purely, because we can't always describe how we are feeling, and fighters like me don't want to concede in our own heads to what's going on... PA or b12 def only is simply a serious, sliding thing that can happen and you learn, hopefully, at some point you may never get a definitive diagnosis because the testing is flawed... For me, having been forced to treat myself a diagnosis may still not be possible as the self injecting will skew it... It's not hard to see why we get fed up or even end up depressed... This is helped if diagnosed properly, and successfully... Probably in that you have the paperwork to prove it.... But then more pressure as you are likely to have to strong arm a GP... So mood or being fed up or filled with doom can be an outlook due to what I've described or the fact that it's broken your spirit and you can't summon up enough to see the light that maybe at the end of the tunnel.. If b12 def or PA was something tested for, treated properly and successfully and standards were across the board, less people would feel hopeless and helpless... I feel that should be your article or message... "It's no wonder the doom".. Could even be your headline!!.. Depression and tablets are too often thrown at people, when correct help at the right time may prove that winding path isn't even a prospect

[123harry in reply to scorpiojo]

very well said

[scorpiojo in reply to 123harry]

Thanks if for me.. I just don't think we should have labels or someone who has had an easier ride to help etc played out as anything other than someone"luckier".. I'm guessing no one with a long term illness escapes the doom feeling, but getting a wrinkle can do that for me. (I'm vein that way lol)... But we are going to vary in that according to personality we had to start with, amount of struggle, recovery and elements around us... If you took away b12 the percentage that actually have proper depression would probably be the same... I think... Doom is something completely different as you remove the issue you remove the doom... Unless, you are a pessimist... Then, is that true depression? Imo I don't think so... Finding someone with out the feeling of Doom won't prove anything other than you've some how been jammy and best to you... Why others deteriorate into depression and maybe sooner due to HELP and DIAGNOSIS and CURE is a test for the medical pro's ... An article re that research and patients struggles for treatment would benefit much more... I'd be surprised if anyone hadn't had a Doom period in their life... Xx

[Foggyme Administrator in reply to scorpiojo]

Hi Scorpoijo...can I just clarify....I don't 'have anything in mind' but maybe you didn't think I had 😀.

My concern was, I think, like yours...that reporting of the issues in terms of 'deficiency mood' and 'sensations of gloom' is an entirely reductive way to consider the complex issues that surround B12 deficiency, PA, and people's experiences and struggles related to these, particularly in relation to diagnosis and access to appropriate treatment.

And although we all may feel a 'sense of doom', at times, this is entirely understandable given the way we have to fight for treatment whilst feeling so ill. In this sense, 'doom' can't 'simply' be ascribed to a symptom of b12 deficiency or PA. (as you point out).

I entirely agree with your comments that reporting of the issues and struggles people have trying to get treatment, and the devestating consequences suffered through lack of treatment, would be a much more beneficial way to approach this issue.

I think it's very sad and bad that us deficients have to live in a twilight world of non-living whilst the medical profession remain ignorant, arrogant, dismissive and positively hostile (at worst). I'd also like to say SILENT but that requires a level of knowledge that most don't have!

But here's a thought....when I have more of myself back, I may put together a briefing paper, underpinned with medical evidence, and take it along to my MP. If this comes to pass, I'll ask some of our more experienced members to comment, edit and review the paper first (if any would like to offer 😀). But that's a thing for another day....

Anyway...good luck with your ongoing self-treatment...And here's to an absence of doom! 😀

[scorpiojo in reply to Foggyme]

My response was to the post itself not you hun xx

[Foggyme Administrator in reply to scorpiojo]

Phew...thanks Scorpiojo...thought I'd put my foggy foot in it 😱😱😱.

I often do, and don't even know!

Words are sometimes such tricky things...

Relief 😃😃😃

[scorpiojo in reply to Foggyme]

I've felt doom over the Gov, party politics, friends, more importantly death of loved ones and at my falling apart and failing health re b12... Like most anti depressants offered... I think some can get away from doom some can't... Some are truly depressed some only angry and frustrated like me.. We all suffer the same symptoms apart from depression (some elements of it anyways I.e. Fatigue) ... I wouldn't want a cure or good practice to be sought by totting up the actual depressed.. We already play the lottery game as in when you can't move they may believe you... So if only the depressed or doom feeling folk get mentioned in an article etc I don't feel an article on that single thing is what will help... You and I agree foggy xx

[Foggyme Administrator in reply to scorpiojo]

Indeed we do Scorpiojo 👍

Hugs xxx

[Hillwoman in reply to Foggyme]

Foggy, I completely agree with your comments. And good luck with putting together that document - it's an excellent idea.

Am I right in thinking you are/were a nurse? Just out of interest, how on earth did you manage to work alongside doctors? I know they're not all berks, just most of them.

[Foggyme Administrator in reply to Hillwoman]

Thanks so much Hillwoman. I wouldn't deign to speak for anybody else and it's always nice to hear what others think 😀.

And yes, you're right, I used to be a nurse. Once qualified, I always worked in specialised units where doctors were usually more on-the-ball. When NHS manages moved in big time, I transferred to night duty in A&E in order to avoid them! Senior doctors there were again, quite knowledgable, and the 'juniors' used the nursing staff to keep them on the straight and narrow. Those that didn't quickly came unstuck and swiftly changed their ways 😀.

However, that was then and this is now!

I've been largely unimpressed with the several consultants I've seen lately and my GP's are no better!

It grieves me to read of the treatment that we difficients receive from the medical profession and I get really angry about the level of arrogance and hostility most are subjected too!

In my heart I'll always be a nurse. But I have to say that I would not (could not) work within today's NHS or with most of the current breed of medics!

Having said that, I jump for joy when I hear of 'the good ones' and for the sake of sanity, I try to hold on to the thought that no doctor would wish to do harm.

If only it were that simply 😀.

Take care and be well xx

[clivealive Forum Support in reply to Foggyme]

"us deficients" - now that's a new one on me - I might start using that.

I spent nigh on 40 years not knowing anyone else with P.A. and began to think I was the only one in the world.... Silly me

Keep well Foggyme

[Foggyme Administrator in reply to clivealive]

Thank you clivealive. It's truly uplifting to know that we're not alone in this very alone thing!

Goodness only knows how you managed for 40 years in the wilderness! Well done you 😀.

And you keep well too clivealive xx

[E-A-S in reply to Foggyme]

Well said. Here's to your getting 'more of yourself back' and putting together that much needed briefing paper.

[Gambit62 Administrator]

I was told I had low B12 when I was in hospital after a fall that left me with a broken ankle.

I now know that my main symptoms were neuropsychiatric and started before I even got to my teens. No feeling of doom - just full blown depression and not wanting to be alive that had been going on for 40+ years - so definitely varies from person to person.

I don't have a problem with deficiency mood or "sensations of doom". I do have a problem with GPs and any medic who thinks that either anxiety or depression is a diagnosis. Both are labels for clusters of symptoms that could have a range of causes but are used as excuses for throwing ADs at people rather than looking for the underlying causes. Sometimes blood tests are done and only show normal range at which point I have a problem with the appalling poor grasp of statistics and what 'normal' actually means displayed by most medical staff ... and probably the world in general. Normal is based on statistical averages - people vary - medics should be treating patients not statistical averages. Basically - just too much getting things totally back to front and not using common sense ....

Definitely getting ratty - an indicator that I need some B12 right now!