Yesterday's post on Martyn Hooper's blog

[Sleepybunny]

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.

[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]

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 in reply to Sleepybunny]

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 in reply to Frodo]

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