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Pernicious Anaemia Society
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Is no news good news ?

Don't know about you, but I can't help wondering...... when you don't hear about someone for a while, is that usually a good thing: they are getting better and so don't need help ? I'm really hoping so.

For instance, if clivealive wasn't one of the first people to answer me, I would probably worry about him. Ditto if I saw a new post where someone wasn't looking after their folate level and he didn't ask that question!

Did Grannyweatherwax get her car yet ? Did AmyG6500 continue to improve on her trial ? Is beginner1 just teasing us with mention of a new cartoon character ? Do I need to get a life ?

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Also when you’re out shopping and you look around do you find yourself wondering are you one of the people who’s help I take on board to get me through this . Are you going through this too .

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This is an odd condition to have, and if the gps were to be believed- rare! You wouldnt believe the amount of people i have found also suffer, my sons friends mum, who cant make do on quarterly, so on my advice did actually get her gp to cut down interval and my sons g/f's mum who seems to get by on quarterly, to name just two.

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Hi Cherylclaire - me too I worry too.

I have a 1/2 drawn cartoon but no energy to finish it.

I was intending to write a post but no energy at the moment and can't think of what I need to ask.

Was pummelled by physio yesterday and am flaked out.

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.....but you're still here, and half-finished is at least started.

I kept buying art materials that I could ill afford, just so I had them to hand if a good day suddenly came over me. It made me feel as if I had started a project, even though I was far from ready. Now I've got 3 on the go. Works in progress.

Don't give up. Your cartoons make light of our shared problems, and we all need some of that. When you're ready, beginner1, is soon enough !

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No news from me on the health front is bad news, been too poorly to even try and word together my latest needed post.

As far as the new car, end of November - hopefully. It is currently "in stock" but we have to wait for Des Gosling's company to fit the smart person transfer before we can have the car, and we've been really struggling to get the remaining money together so we're hoping that it stays as towards end of November anyway. :-)

Thank you for thinking of me, it is lovely to know that in the big wide yonder, someone cares about what's going on. :-)

How are you? Anything new with you? :-)

Very best wishes x

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Never far from my mind (such as it is). Sorry that I'm wrong about the "no news" and get it about the money. Employers have now stopped paying me anything- fair enough, it's been a long time. To their credit, they are keeping my job open until Easter.

Brain scan fine, still waiting for genetic test results, now also waiting for SIBO breath-test results, haematology signed me off and are sending me back to neurology. No longer bothered that haematology have halved my injections to 1 every 2 months as I'm now self-injecting.

Since starting with self injecting at the beginning of September, I have been seeing improvements almost from the start. I also seem to have improved my technique and no longer hit nerves or blood vessels. I did have a setback, where symptoms returned (even some that I thought were gone forever) - but this was rectified when I started taking the awful-smelling daily multivitamin & mineral tablets again. I did panic a bit when that happened because I thought the B12 had stopped working- or worse, that I'd been barking up the wrong tree for years ! Couldn't go through all this again from the start.

Had my 2-monthly B12 injection at GP's yesterday, since nobody has told me that I can't, and for the first time ever since the first injection in Feb 2016, I felt it and it stung! That's got to be worth a glass of Chilean merlot !

So despite what the haematologists think, I know precisely what is making me better, and that if I don't inject every other day, if I miss one for some reason, it takes a while to get back on track again. This is the current situation.

I still believe that my GP (and St Thomas') was right about my having functional b12 deficiency, but that the 2 injections a week given to me for 6 months were not sufficient for my recovery. Things are only just starting to happen now for me.

Very very very best wishes to you, Grannyweatherwax. Might have had to swallow an awful load of old tripe, but at least I didn't have to eat raw liver !

PS: What is happening re. frequency of your injections ?

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I feel I "got a new life" when I was diagnosed with P.A. 46 years ago after a 13 year decline in health following gastric surgery to remove two thirds of my stomach at the age of 17 in 1959.

I spent nearly 40 years in complete and utter ignorance of what P.A. was all about - and believe me, ignorance is not bliss - until I joined the Pernicious Anaemia Society in 2011 and started asking questions and getting answers on their then "forum".

This "community" as a (continuing offshoot of the above) is a "life saver".

Sadly I cannot be on here 24/7 Cherylclaire but I do try to read all replies even of those on which I haven't commented.

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clivealive "I cannot be on here 24/7"

Oh dear, what a feeble excuse. Must do better! Agree Cherylclaire ?

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"Must do better!" beginner1? You sound like my Princeton College (Holborn) maths tutor, the delectable Miss Ross, who not only used to say that to me, but also covered my work papers with kisses and told me to "come and see me after class!"

:)

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Would he have said that to the delectable Miss Ross ?

I think not.

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I was in a mixed class of thirty or so disabled persons with ages ranging from 25 to 50 (I was 28). Some had arms, eyes, legs fingers etc. "missing" or damaged - I just had "no guts".

All of us were unable, by reason of our disability, to continue in our chosen careers and been unemployed (and unemployable) for three or so years - I was a qualified electrician.

The then "Ministry of Labour" M.O.L.(under Mrs.Barbara Castle) deemed me suitable for re-training in the artifices of accountancy and over a hundred of us "MOL students" were sent to London for a five months course during which we learned Book-keeping and Accounts, Commerce, Typing (up to 40 wpm) Maths and English up to the equivalent of G.C.E. "O level"

The "delectable Miss Ross" took us for English and Maths and literally took us back to infant school levels of learning and it was amazing how "brain dead" one can become whilst sick/unemployed.

Miss Ross was of a lower age than most of us and a very beautiful and patient young lady and everyone "loved" her despite her making us re-learn what nouns, adverbs and adjectives were and dragging us through addition, subtraction, multiplication and division of fractions etc.

We just couldn't see the point of most of the exercises she set but it was all about getting our brains working again.

I was very lonely during that course from September 1969 to February 1970 as London was too far from my home, wife (Valerie) and two little girls aged two and six months (who all went to live with Valerie's parents for the duration) I had to live in "lodgings" and was only allowed a rail travel warrant after six weeks of the course. I couldn't afford the train fare "home" to the "in-laws".

The college was an old three storey school and all our classes were on the top floor, there were no lifts and no two "lessons" were in the same room consecutively.

I "teamed up" with a lad (Fred) who had fallen off some scaffolding and shattered both his knees and we always sat together (except in typing) and we set up a sort of rivalry between us as to who would finish projects first - which was good.

When we "complained" that there were so many stairs to climb and class moves to make carrying all our books and things we were told it was a deliberate policy as there could be no guarantee that should we ever get a job it would all be on one level.

This was two years before I got a diagnosis of P.A and two years after a first "Schilling's" test which had been "inconclusive".

I was blessed that at the end of the course I got a job as book-keeper for the office equipment manufacturer and distributor Rexel Limited whose H.Q was then in my home town and for whom I worked for twenty seven years taking their accounts systems from manual (quill pen and high desk), through mechanisation to computerisation.

So I shall ever be grateful to the three tutors on that course (one of whom was disabled himself and had sat at the same desks some years previously) for their patience and guidance - including of course the "delectable Miss Ross" :)

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So can I stop worrying then ?

You seem to have 9 lives, Clive, and each one a little better than the last. 17 was very young to go through an operation like that, and then to go into a tailspin for all that time. Simply getting a diagnosis is not always enough either, is it ?

Which is why I've given up trying, because along comes another expert to undiagnose you anyway ! I'm now far more concerned with getting better: if not all of it, I'll take whatever I can get back and be happy with that. Lucky, even.

Sick of getting worse, and certainly won't do it just to try and prove a point to people with their fingers jammed very tightly into their ears !

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