I've been a member here for a number of years but it's been a while since I last logged in. I want to scream in frustration, really!
I was 22 when I got PA, and self-injected (monthly) for almost all that time, with the support of my Practice Nurse.) Then NICE changed it to 3 monthly! I tried to cope on quarterly injections and for a long while I managed,
They have never, ever allowed me 2 monthly, even though I have always had neurological symptoms. Then I got an unexplained DVT in my left leg, I became extremely fatigued, over Christmas I scalded all my left arm, burnt several fingers, and then, just could not stay awake!
So, after arming myself with info from here and the PA website, I tackled my GP about my B12. She agreed to monthly injections for 3 months with a continuation of that if there was an improvement (there was, a huge one). Unfortunately, after 3 months, she seemed to hve forgotten all bout it, so I booked an appointment with her and she simply said No, it would be 3 monthly!
So, I handed her a letter I had reedy, and went through it verbally. I told her I was withdrawing my treatment for my PA and I would purchase the syringes, needles and ampoules myself and take it monthly. She considered this and then said if that was my wish that was fine. But she would prefer to prescribe my ampoules just to be sure they were safe.
And that was it, I’ve been trundling long on that basis quite happily, until now!
Last week I noticed there was a note on my online prescriptions that my B12 should be issued 3 monthly ONLY. I mentioned it to the nurse yesterday and she booked me a telephone appt with the doc today.
I got nowhere, he mentioned the placebo effect, my age, and the fact that I had diabetes which was far more important than a vitamin deficiency. Really? In this day and age, we are still getting such ignorance? I gave him the web address of the B12 deficiency website and asked him to please red it, and in particular, watch at least the first 5 minutes of the video at the bottom of the home page. He said he would but I doubt he will.
I said well look, I don’t need all this grief from someone who clearly does not understand B12 deficiency and PA. are you going to prescribe the ampoules or not? That’s all I want to know. He said ‘Absolutely, you do need it, and I will prescribe it for 3 monthly.’
So, I just said, You might as well take it off my prescriptions, 3 monthly is useless, so I will need to buy it. I won’t be ordering it from the surgery. Thank you for your time and I sincerely hope that you, nor any of your loved ones ever get PA, because it will be a reel eye opener if you do!
I put the phone down and just sobbed in frustration. Even my own husband doesn’t completely get it. Although when I start dropping things and being generally clumsy, he always asks me if my jab is due!!
More importantly, the ‘diabetes is more important’ comment left me speechless. He didn’t seem aware that Metformin can deplete B12. Oh wow!