Yesterday's post on Martyn Hooper's blog - Pernicious Anaemi...

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Yesterday's post on Martyn Hooper's blog

Sleepybunny profile image
4 Replies

martynhooper.com/2016/09/23...

Hi,

Thought you all might be interested in this. It gives a good account of how the PAS can help people with PA who have had their injections stopped.

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Sleepybunny profile image
Sleepybunny
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Frodo profile image
Frodo

What if the person has not had a formal diagnosis of PA (which many haven't due to the inaccurate testing system) but have all the symptoms and have responded to injections? But then have injections stopped - can the PAS still help?

Sleepybunny profile image
Sleepybunny

Hi frodo,

Not sure about that.

I think it's probably easier to help where there is a formal diagnosis. I do not have a formal diagnosis of PA but was and still am symptomatic for non diet related B12 deficiency.

I responded to treatment...had to treat myself though and some of my neuro symptoms disappeared.

I think for those of us in the UK who tried to get a diagnosis before 2014 when the BCSH Cobalamin and Folate Guidelines came out, it was more difficult.

I think there is a good chance if i presented to GP after 2014 with the low b12 result and full range of neuro symptoms I had several years ago I would have been diagnosed with Antibody Negative PA as mentioned in the BCSH Cobalamin Guidelines. I think 2014 was the first formal recognition in UK guidelines, that Antibody Negative PA existed.

Frodo profile image
Frodo in reply toSleepybunny

Thanks. I'm sure it's easier to help if there's a formal diagnosis, but many of us don't have that.

Interesting about the guidelines, I hadn't realised that Antibody Negative PA had been formally recognised. Presumably its existence is still a matter of opinion in individual cases though, and depends on the doctor knowing a lot about PA, believing a patient does have the symptoms they say they do, and taking that seriously.

Frodo profile image
Frodo in reply toFrodo

Just seen a reply on the blog post - PAS can and do help in this situation. Really good to know!

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