Pernicious Anemia Test - how do you score?

[Mrs_Somerset]

Hi,

I just went tot he PAS website to check on a post I had written and unfortunately the forums are down due to maintenance - however I did see this test on the mainpage and although I have done the symptom checker before ( and taken it to my GP) I thought I would give it a go:

pernicious-anaemia-society....

now - I have been diagnosed with PA, have IF antibodies, have been given 3 months of B12 (hydroxycobalamine shots) every other day, BUT my doc has now stopped the shots, and now am every 2 months one shot, without any follow up.

my pins and needles did go when onthe shots, I felt warmer, and my skin was less dry - other than that little change to my symptoms. 1 month without shots and all symptoms are back.

I did the test and I scored 72

how about you - what did you score?

Big Hugs,

M

[Gambit62 Administrator]

My score is somewhere north of 55 - there are a few things that I'm not really sure of - seem to have psychological symptoms rather than neurological - probably hasn't got that bad yet.

It's really difficult to get some GPs to listen - I have sort of given up after being told that it 'couldn't possibly be B12 because I'm receiving injections' and offered anti-depressants instead last Friday. However, I'm a bit of a try it and see person so I have been experimenting with other ways of getting B12 and found that if I take about 3x the recommended dose of a nasal spray I have (enormous in relation to RDA) then I do seem to notice improvement. My mood is vastly improved, and I have a LOT more energy - run is almost a run rather than a sustained fall, I'm a lot steadier on my feet - even on the normal dosage I found that the memory had certainly improved. I'm also finding it a lot easier to be around people - something that has got steadily worse over the last few years. Its hydroxocobolamin so may not work for you as it appears that a different form of cobolamin is generally more effective if you have neurological symptoms.

I'm probably not the best model - long standing distrust of GPs and a general reluctance to have anything to do with them, whereas B12 is definitely a condition that needs monitoring closely - especially because it can lead to/interact with other autoimmune diseases, which often have very similar symptoms, but sometimes it is just good to feel a little in control of your own destiny.

[Mrs_Somerset in reply to Gambit62]

Hi Gambit62,

Sounds like you have had a rough time of it, although it also sounds as though taking things into your own hands has helped you out.

From my own experience and from what I have heard on a number of HU forums ( Thyroid UK, fibro) GP's in the UK will throw antidepressants at pretty much anything - something about them getting extra funding for each patient with depression - I must confess I get more cynical by the day.

I really do wish someone would invent a machine where just for a day you could swap bodies with your doctor - just so that they can experience the pain, the nausea, the shaking etc etc etc - and then tell you that you must be OK becuase they have given you x,y or z.

I have learned to be more questioning of doctors opintions, something I still find hard to do - but with the support from people here on HU I have come a long way in the last year, even if I am no closer to a fix, I know that there are people on here we can talk to - even if they cannot fix us, they are so willing to listen - I hope that proves useful to you.

being ill - especially with a debilitating illness is soo lonely, I mean I have a husband and family and freinds - but seriously after the first few times of responding to "how are you" with details of how rubbish your day is - no one wants to listen, so I just do not talk about it any more, but I do here on HU, andhope you feel you can too.

I certainly do not have all the answers, and most days I am too ill to post anything, but there are a lot of us, and we are here if you ever need to talk, the particular member may change from day to day depending on our own symptoms and issues, but there is always someone about :-).

Big Hugs,

M

[Gambit62 Administrator in reply to Mrs_Somerset]

To be honest GPs are often a bit quick to push pills when people are depressed - no attempt to actually match the response to the person.

I wouldn't claim that I don't have problems with anxiety and depression - just that over the six months I've really realised just how much the tiredness affects my ability to keep on top of the anxiety and depression problems I do have because when I'm tired I'm just aware of being tired and not necessarily aware that I'm stressed so not in a position to use the things that I do find helpful (meditation) - tried mentioning that to the GP but don't think he was in a position where he could hear. Sad really.

Generally I wish they wouldn't pretend that they knew all the answers as much as I think they feel they have to - it's utterly impossible when there are so many things out there ... and so many of the symptoms overlap.