Hi,
Earlier today I looked at the PAS website.
They were asking if any PA sufferers had stories about difficulties in getting a diagnosis and would be willing to talk to a journalist.
pernicious-anaemia-society....
I don't know if the journalist would be interested in people who have other causes of B12 deficiency.
In a way I would love to tell my story, but if my doctor would hear of it I would surely be banned from the surgery. So I couldn't name names. That's what loads of P.A. patients fear,and the G.P.s know that. I have told my story to a few people,and they seem to think that I'm exaggerating,and certainly don't take me seriously. They think that I have a bee in my bonnet. But we all know the hell that we have been through. Because as we know, in desparation we turn to this site, if we are lucky enough to have a computer,and can use it.. Think of all the poor devils out there who haven't. Elderly people without a computer ,homeless people etc. It upsets me to think about it. I have a strained relationshio with my doctor now,as I have told her that I have to self-inject,and she is absolutely against it. I had to pay a private G.P at a Nuffield hospital to get my diagnosis of P.A. I must shut up now.
With so many people having similar stories do you think your doctor would know that you had contributed? You shouldn't have to identity your doctor or surgery unless you're willing to do so. I understand your fear however.
Thanks for posting and giving link. The post states: "If you have an interesting story about the problems you faced in getting an accurate diagnosis and adequate treatment and are prepared to speak to a journalist about this please get in touch. Use the 'info' email address - info"at"paso.org.uk (replace "at" with the@ sign). Please include a contact telephone number so that we can call you and get your permission to pass on your details to relevant journalists."
The idea of getting these stories out is appealing to many of us but I would carefully check out the publication and reporter before agreeing to participate, perhaps ask for copies/links of other articles they have published. If they were to take a sensationalist mode it might diminish the issue rather than help get the problem to light.
As the request is posted on the PAS website I would hope that they've done the required vetting.
For authenticity, yes.
Hi. If I can be of any help I would love to. In brief. I was taken to casualty in January. Couldn't breathe, dizzy, headache, nausea, confusion etc. Was discharged from A&E and told that I had a TIA and referred to a specialist. Seen the specialist one month later. Sent for various tests. Heart and blood pressure monitor, CT scan which followed by an MRI scan. Few months later symptoms were getting severe so while waiting for a further hospital appointment went back to the GP. He prescribed Co Codamol and anti emetic drugs. Three weeks later feeling like I was on another planet numerological symptoms severe and unable to function I went back to the GP. This was now July. She asked me had the origional test been looked up. This was back at the begining of the year when I went to casualty. She told me my MCV & MHV were raised and B12 was at 150 she explained that she suspected B12. Deficiency. Three days later. Blood tests confirmed this and I had two weeks loading done and plan for every 12wks injections. When my appointment came for the hospital I seen a different consultant. The earlier one had moved. I explained to the new doctor what had happened and when he looked back there highlighted in red was the red blood cells and B12 deficiency. I was let down by casualty and then further by a specialist.
I am now on 8 week injections but two weeks ago had recurring symptoms and back for bloods to be told my levels are low. They are repeating the bloods this Friday but offer no further treatment. I am so disappointed with the service I have had.
Sorry for the long winded post. Tried to keep it brief.
All our stories seem so similar, the one abiding thing that eventually happens, is that our medical providers treat our conditions with mistrust, doubt and sometimes contempt. Such a shame when all we want to do is be part of our previous lives.
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