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.
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.
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?
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.
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.