cousin hospitalised with Pernicious Anemia

cousin hospitalised with Pernicious Anemia

Hi All,

It has been a while, mainly because I have been feeling so rotten.

I thought I would share this with you all, as an insight into Pernicious Anemia untreated and also how other countries (other than the UK) deal with Pernicious Anemia:

a couple of weeks ago my father called me to let me know my cousing ( father's, brother's son) had been rushed to hospital and diagnosed with Pernicious anemia.

He was rushed in due to him collapsing

( Uk ref: I have collapsed dozens of times and my NHS GP is aware of this and has done nothing)

His blood was taken and tested - they advised him of his pernicious anemia within 1 hour

(UK ref: my NHS GP knew for 3 years I had PA and did nothing, not even telling me)

He was kept in hospital for a week with daily visits frot he haematologist

(UK ref: my doctor to this day refuses to refer me to a haematologist, I have asked and begged many times, the nurses at the GP surgery have asked on my behalf also, my neurologist has asked he refer me, and my physio)

He was given B12 injections every day and his blood was taken every evening to measure iron, blood count etc. He has NO neurological symptoms.

He was also given potassium and folate.

(UK ref: I have had 2 blood tests in 6 months, I was given 3 injections / week for a while, NHS GP then decided WITHOUT doing any tests tht I was "FULL" and stopped this. I had and still have neurological symptoms. My NHS GP denies that any suppliments will help me, so I have to buy my own potassium, magnesium, zinc, selenium and folate)

He was let out of hospital after a week and has weekly appointment with the doctor for a check up, and weekly appointments at the hospital to have the injections and other check ups.

(UK ref: I am allowed one injection every 2 MONTHS, and my doctor has not scheduled any check ups at ALL, and i have not seen him in nearly 3 months - just the monthly telephone call to renew my sick note for work)

My cousin is already starting to feel better, more energy, clearer head, producing a good level of new red blood cells with plenty of iron.

(I still fell awful, exhausted and run down, brain fog, tinitus, tingling in lips, fingers, and numb in my feet, cannot walk, etc etc)

My cousin lives in Berlin, Germany.

I live in the UK.

I hope this is of interest and anyone who can afford to move abroad might consider germany :-)

Big Hugs to everyone,

M

6 Replies

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  • Hang on, hang on - are you trying to say your cousin not only got treatment but actually got acknowledged as being ill!!!!!!!

    They don't just send them out in Germany and tell them to take their minds off it and work harder?????

  • nope

    he himself thought he had been feeling down because his mother had died recently, but the doctors - and wait for this - advised him that his symptoms of low mood, lethargy, lack of appetite, and brain fog, were most likely due to his PA!!!!!

    errrm - docs in the the UK take the exact opposite approach - but hten, apparently docs in Germany are not incentivised in the same way - they do not get extra funding or "credits" for diagnosing depression or handing out antidepressants.

    interesting isn't it?

  • Yes, that is interesting.

    I had a neighbour who clearly had emotional problems and she went to the doc and he said her problems were circular and she needed to see a therapist.

    I went to the docs a short while after, before I went with the b12 stuff - about my back (which was probably b12 stuff, but anyway...) and he asked me how I was getting on generally (I was new to the area) and I said I didn't like my neighbours too much, they were a bit snoopy. He turns round and says, did I want to see a therapist because maybe I was mulling these things over too much and the problem was circular!

    Seriously.

    I actually said to him, do you get paid for referring people to this therapist? I mean, he asked me for heaven's sake! ... and he did nothing for my back.

    Only last year I saw on a Michael Moore video, a UK doctor say they got incentives for referring people who had emotional or mental health issues! Michael Moore saw it as the British people being helped ... yeah right...

    Your point about German doctors not having that 'incentive' is very, very true.

  • I find all this absolutely terrifying, that people can't get proper diagnosis or treatment. I've joined this forum due to symptoms which might be PA, might be thyroid, etc for which I can't get a diagnosis ("would you like me to refer you for counselling?"), the more I read on these forums, the more I've realised how much I've been fobbed off over the years, as I see several blood tests are not a true reflection of a condition, and we can be told results are 'normal' despite experiencing quite profound illness and disability. Is there anywhere else we can go to get a second opinion, or anywhere in the NHS where we can raise these kind of issues, beyond the GP surgery?

  • You can try to go privately, have a look at this link, it may help you further:

    pernicious-anaemia-society....

  • Thanks, Marre! Maybe at some point I'll be able to do this. But I'd really like to know for now how to proceed within the NHS if possible, as I don't have much money. Mainly due to health problems affecting my ability to earn a living, and having spent so much on complementary therapies and supplements over the years, having been dismissed by GPs.

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