Thanks for sharing

Just a note to thank everyone for their time and effort on this forum. Since I have found you all I have learned so much about how to look after myself. For many years family, friends and my doctor convinced me it was all in my head and there was nothing wrong with me. "Go for a walk and get some exercise" was the war cry. They did not understand that sometimes I was just not capable, quite humiliating when you are a PE teacher. Once I realised it was not all in my head it actually empowered me to research, educate and become stronger (to stick up for myself). It would not have been possible without reading all your posts. You guys are all an inspiration to others. Thank you all. X

5 Replies

  • Well said clairegrigor

    I've had P.A. for 45 years - probably a fair bit longer before it was diagnosed by my then doctor who was a bit of a "wag".

    When she got the results after innumerable tests (including 2 Schillings tests) she asked me whether I wanted the good news or the bad news, so thinking to get it over with, as a man in a new job, with a sick wife and two daughters under five I said:

    "Give me the bad news"

    "You're going to die and you're going to die within two years".

    Somewhat taken aback I said "What's the good news then?"

    She said "You're not going to die if you eat raw liver three times a day - or alternatively have Cytamen B12 injections every four weeks for the rest of your life".

    Resisting to ask whether the liver was to be taken before, during, or after meals I meekly replied "Can I have the injections please?" and had the first one on 10th May 1972 - And the rest is history,

    However, like you, I've had difficulty explaining my "illness" to family, friends and colleagues down through the years and none of the succession of GP's has ever (when attending an appointment with them for other reasons) commented or asked me how I was getting on with the P.A. It just seemed to be ignored. I said nothing so nothing was said.

    I had already been registered as disabled before the P.A. diagnosis (because of having had two thirds of my stomach removed to to a perforated peptic ulcer when I was 17 in 1959) and had been sent away at the end of 1969 on an intensive 5 months Government retraining scheme in accountancy at a college in London together with 90+ other disabled persons, most of whom manifested visible disabilities whereas I stood six feet four inches tall and looked the picture of health. "And what's wrong with you?" I was constantly being asked by people missing various parts of their anatomy.

    Thankfully I finished the course on Friday 13th February 1970, started work in my new career on Monday the 16th February but it was only a matter of months before the (then unknown) P.A. symptoms really started to "kick in" and I was often walking around feeling like a "zombie". The b12 brought me "back to life" and I continued with my new firm for the next 27 years. They were very good, allowing me to "disappear" every fourth Tuesday at 10.30 am for my injections at my surgery, much to the mystification of my work colleagues (apart from my diabetic boss) who wondered where I went.

    In recent years I began to feel the need for more frequent injections. I had been tried on the (then new) "Neo Cytamen" (Hydroxocobalamin) but had some bad side affects and certainly couldn't cope with the three months cycle so I'm still on the original shots. As I made my own appointments with the nurse I used to slip in the odd three week injection two or three times a year and everything went fine until a nurse picked up on it and said she could only give me them every four weeks because that's what it says on the prescription. She reported me to my GP who called me in.

    He is a "one size fits all" kind of guy (irrespective of my height, weight, age, or metabolism) and when I explained to him how I was feeling in the run up to my next injection said it can't be the P.A. because you are having the b12 injections and was adamant that I had to do what it "said on the tin".

    I then joined the PAS and my first question on their forum was something like "am

    I the only person in the world who gets symptoms like this before their next injection?"

    I was astounded at the number of responses from "fellow sufferers" in the same boat.

    I went back to my GP and confronted him with the advice I'd gleaned from PAS and this site and now my prescription reads "Use as directed" and it's me who does the "directing".

    So, there is life after P.A. and I'm still "clivealive" coming up to 75.

    Sadly my first wife died aged only 46 in 1992, but I remarried four years later a girl who served me at a Tesco supermarket. It was a case of "buy one, get one free" as she also has a daughter and now I have four grandchildren of my own and two step grand kids.

    I wish you and all my dear readers well for the future.

  • What a lovely ending

  • "For many years family, friends and my doctor convinced me it was all in my head and there was nothing wrong with me. "

    I truly understand.......

    I knew there was something physically wrong but no-one really listened or believed me to begin with.

    "Go for a walk and get some exercise"

    I was told to ride a bike when i said to GP I was scared because I could hardly walk some days.

  • Go girl ! you have been through a lot and what an insult to you a PE teacher ! I remember that from a smug woman after my stroke and B12 issues. When I told her my regime she almost passed out. I got very paranoid and I think living on my nerves like that helped me keep going. I crashed of course, when it got very very low 20. I got angina, kept going and i reckon it could have been curtains. this forum is the most informed i have ever seen. I wish you the best of luck on your recovery. I still exercise, but it gets very hard when i am due for my next jab. It is not all in your head you are just body aware. Thank goodness you kept on questioning xxx

  • Thank you for sharing your stories both Ckaird and Clive. Very interesting to hear your experiences.

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