PA survey

[Nackapan]

Just completed the latest survey.

Top 10 important things gor future research.

The only thing i couldn't answer properly ad there wasn't an option.

That is untested for IFA so assumed

Ifa neg but needing very frequent b12 Injections .

Then at the end how long since your diagnosis of PA or other option was n/ a

Perhaps it coukdve said first diagnosis of low b12 or functional b12 ?with nothing else found ??or assumed PA ?

Then a separate question .

Have you a PA diagnosis

By missing thus the length of time on b12 Injections missed

[Sleepybunny]

Hi.

Link to news item about the survey

pernicious-anaemia-society....

[Narwhal10]

Hi Nackapan,(And others reading the post).

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.

Best wishes

[Nackapan in reply to Narwhal10]

Same here

[glinks]

Can those with just B12 deficiency (no formal PA diagnosis) fill this in?

[Cherylclaire Forum Support in reply to glinks]

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 !!

[Cherylclaire Forum Support in reply to glinks]

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.

What do we all want most ?

[Nackapan in reply to Cherylclaire]

Also be interesting to see who with the formal diagnosis of PA A. Had one NHS test at the start

Or

B. Paid for a private IFA test

Or

C. Paid for several

I also urge those with a b12 deficiency to do the survey

One of the questions is about s better test?

I was initially told must be PA and injections for life by one G.p

Then 'chosen Gp ssid it was dietary?

But sanctioned 2 weekly b12 injections?

One Gp said thst the low b12 was a 'red herring and the injections should stop as woukd mske me ill.

But found nothing else's wrong.

All in the ssne practice. No unity at all.

All so confusing 😕

[Cherylclaire Forum Support in reply to Nackapan]

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.

[Nackapan in reply to Cherylclaire]

Yes let's hope it gets less confusing for Gps so they csn help us more.

I think with b12 helping long covid patients might help all of us.

Also the unfortunate patients getting ill again being put on tablets must be fife also making them think again.

I know Gps up against it but so are we!

Long term cost effective, time effective and of course better quality of life for us.

[Cherylclaire Forum Support in reply to Nackapan]

....not to mention Brexit causing delivery problems when, with no alternative, trying to help ourselves to get well.Give me strength.

[Cherylclaire Forum Support]

Done it, Nackapan !

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.

Then also no box to explain this contradiction.

So PA to get in and N/A to get out !

Hope we are not "null-and-voided " !

[Nackapan in reply to Cherylclaire]

Glad it wasn't just me! Needs looking at I think