I no longer have PA

[Sleepybunny]

The title comes from a post on Martyn hooper's blog. I wondered what the rest of you thought?

martynhooper.com/2015/09/24...

[megan17]

Well technically he's correct; it's no longer pernicious for him due to the injections and he is no longer anaemic. However it seems to me like telling a diabetic on treatment that they no longer have diabetes because their blood sugar levels are within normal range. I think the problem with PA is it's label. When I was diagnosed 2 years ago my serum B12 was below 30 and I had severe neurological symptoms but had no anaemia yet I have been diagnosed with pernicious anaemia.............no wonder the medics are confused! This condition needs an updated and more accurate name (however the one Martyn suggested may be accurate but is a bit of a mouthful and I would never remember it!!) So for me I guess I still have PA.

[clivealive Forum Support in reply to megan17]

I've had PA for 43 years and I'm hanging on to it.

I'm 74 and I still have to battle with my GP for the occasional 3 week jab (I'm on 4 weekly cyanocobamalin) because I FEEL THE NEED of the extra boost before the 4th week.

He's a great believer in "one size fits all" without taking into account my height, weight or metabolism or the fact that I "lost" two thirds of my stomach through gastric surgery at the age of 17.

He even had the temerity to suggest, at my last interview with him, that perhaps my neurological symptoms were due to anxiety and stress.

I KNOW how I feel - he doesn't nor ever will do - unless he gets PA....

[Minx1971]

I don't believe it, my hemotoligiest told me I will have it for the rest of my life. I like the way the page, I think it lacked after testing. What a crock, i won't be buying that book !!

[Polaris]

Thanks for posting this SBunny. Am I understanding that even the Chairman of the PAS still has not had a diagnosis of PA and has to self inject?

Martyn Hooper is raising an interesting point and it confirms the research that autoimmune disease starts in the gut.

If he is saying that his anaemia, usually the last stage of PA, is gone, will it be easier for others to get a diagnosis of Autoimmune Metaplastic Atrophic Gastritis rather than the confusing name, PA. and therefore, B12 deficiency?

As we know there are many reasons people become deficient, one of which is the reduction of acid as we get older, leading to atrophied villi in the stomach, so I'm wondering if it will be easier for an older person to get a diagnosis from their GP with an endoscopy, etc?

[Gambit62 Administrator in reply to Polaris]

Martyn was diagnosed with PA many years ago.

He injects himself as the treatment provided by the NHS was as inadequate for him as it is for many of the rest of us who suffer from an absorption problem.

[Hidden]

My GP, a bloody idiot as far as I'm concerned, says I don't have PA even though his surgery has been giving me B12 every two months for the last eight years? So as I feared when I first came on here, I don't get any B12 anymore 😠 I am getting an MRI on my back on Friday to see why my calves are going numb and I'm experiencing nerve pains and hot spots etc. So it looks as if I will have to stay on self injections until the MRI test results come back then I will probably go back to the original doctor who diagnosed it, hopefully we may be in his catchment area again now.

[Sleepybunny in reply to Hidden]

Have you rung the PAS? In some cases they can intervene where treatment is denied. I think Martyn Hooper would be interested to hear that someone who had PA diagnosed in the past is being denied treatment.

hdapatientcaretrust.com/

pernicious-anaemia-society.... 01656 769467

b12deficiency.info/b12-writ...

MPs can be a source of help where people are being denied treatment. Your MP should have a list on his/her website of when they hold advice surgeries.

[Hidden]

Thanks Sleepybunny for the info, maybe once I get the MRI test results because Ican tell them I have PA and they could decide to do a head one too to see if I have any brain atrophy or something that will show my doctor he is wrong. If that doesn't happen I will ring PAS and get some advice from them. Thanks again xx