I hope you are doing well. Thank you for this. I have just completed too. I was ‘assumed’ PA just told B12 for life so no further testing such as IF etc.
Right at the very beginning, this was open to all those without a diagnosis, which is why I filled out the first survey. Having done that, it would only be fair to allow me to fill out this second questionnaire.
After all, who better to ask about problems with diagnosis than those with problems with diagnosis ?
So I'm going to go ahead.
By the way, "just B12 deficiency" or diagnosed with PA: the B12 deficiency is the problem- and the reason that it's going to take most of us a lot longer than 10 minutes, I'm guessing !
Get long-suffering partners to help if you need it -their input also useful.
Don't know what to say yet, as I stopped dead at the first hurdle- who I am !!
I would urge anyone who has B12 deficiency to complete this survey.
I was told by a GP, way back at the start, that the cause did not matter because the treatment was the same, whether PA or not. I didn't even know there was a B12 to be deficient in at that stage. I bet this is quite common.
"No formal diagnosis" will probably cover most people on this forum : I expect many are still looking for answers and haven't yet been helped. The pandemic will have had a huge effect on waiting times for GP availability, tests, appointments, consultants, eliminations etc.
In a survey carried out previously by the PAS, 44% of respondents, all now with diagnosed PA, were first given an incorrect diagnosis. Of all the respondents, many had to wait a long time for their eventual PA diagnosis- 14% waited over ten years. This was a survey group of nearly 900 people.
Your input and your priorities may be different to those of someone who has already had a concrete diagnosis. Maybe not, since they were once you.
And surely that is the point of a survey. To look for commonality despite the differences.
Very.I hope also GPs get involved in this -their input into what they would like to help them make the right decision - because, as you say, three different professional opinions, a list of alternatives to rule out: confusing for them too, and they are the ones who have to tie it all together eventually. For you - going on too long, exhausting enough without a battle on your hands, disheartening and disappointing.
You are right - there is no way to start this survey without saying you have PA, and no way to honestly answer the final question (apart from N/A) unless you actually have PA.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Recently diagnosed coeliac and PA.14yrs symptoms.Long fight 4 diagnosis.
CA you get cured of PA?
Is PA reversible?
B12 deficient or PA?
Liver therapy and PA
