Has anyone ever received diagnoses twice?

[PaintLadie]

So long story short I was diagnosed with PA in the early 2000s. My records seemed to have disappeared with that doctor, so I don't have my official diagnoses. So after this long of fighting for proper treatment and for a B12 prescription I am know being told I need to prove I've been diagnosed with this in the last 3 months to get an appointment with yet another hematologist just because my GP is uncomfortable prescribing me so much B12 . When I was originally diagnosed I was severely sick and megaloblastic. I worry that since I am finding odd ways to get access to my B12 and to continually have it on hand that I may have an inaccurate test. Can this be diagnosed even if you are being treated? There is no doubt I have it. Even if you look at all my lab work from the past year you can put it together and logically see that whenever I've struggled it is due to B12 deficiency. My stomach has atrophy and all. the puzzle pieces are there all that is lacking is the original diagnoses. Any advice on proper testing would be great. I don't trust they know what they are doing to get an actual diagnoses. I'm about ready to switch to a veterinary clinic for care... maybe they would be more reasonable. Im in the USA.

[Nackapan]

I woukd stick to your original diqgnosis.its not that long ago so will be on medical records.It's more than possible to get another positive or negative!!

I woukd be concerned that if a false negative they may wrongly stop treatment.

8ne on injections no b12 levels need testing.

Certainly a second IFAB test not needed I'd already diagnosed with PA .

It doesn't go away!!

So why the test if your b12 working keeping symptoms at bay.

[PaintLadie in reply to Nackapan]

Yes I am very concerned. I don't know why they need to test. They should know that the test may or may not be accurate. It is a doctor at university here and won't schedule the appointment until I provide proof of diagnoses. My new GP is scared to provide me care because she doesn't know enough. My original doctor was a private private practice doctor and I am having a hell of a time getting my records. She is no longer practicing so I wouldn't even know where to go for records.

[jade_s]

Do you know which lab ran them? They might still have the records.

You run the risk of a 2nd IFAB test being negative (saying no PA). You could try to get a private test and if it's positive then show them that. For example findlabtest.com/store/reque...

The only risk of testing IFAB while on injections is that you get a false positive, but maybe that's not such a bad thing in your case 😂 Usually they say to avoid injections anywhere from 2 days to 2 weeks to avoid a false positive.

If your stomach has atrophy, has the gastro not diagnosed AMAG? Autoimmune metaplastic atrophic gastritis. That in itself is sufficient!

[PaintLadie in reply to jade_s]

Thank you for the suggestion. I think I may need to go back to the GI doctor.... He never followed up and just said it would explain my PA after the procedure. That may be my best route at this point. Yeah I cant go that long without an injection...Hmmmm, decisions. LOL yes a false positive would be great!!! If taking to much b12 assures that I will get a positive I don't mind taking the test. i just need to be sure I don't risk getting a negative. I'll look into that private test.

[jade_s in reply to PaintLadie]

Yes go after that GI doc

A false positive is no guarantee by any means - I've had 3 or 4 while on injections - even injected the morning of - and stubbornly negative. Same with another relative. Plus the antibodies apparently wax and wane, so it's not even guaranteed that someone who's had a positive test once will continue to test positive (happened to my other relative, 1st one positive, 2nd one negative, and really complicated matters). That's why I suggest going private, in case it comes back negative. But it may not be necessary if the GI doc's diagnosis is useful. I know, it's complicated :/

Sending positive thoughts 🙏🙏

[Cherylclaire Forum Support in reply to PaintLadie]

Despite being choc-full of B12, I have had three negative IFab tests, which is okay by me as I was given a functional B12 deficiency diagnosis by my GP many years ago.

But for a doctor with little experience and nervous about B12 treatment - I doubt you would ever get tested beyond the first IFab, which means only about a 50/50 chance for those with certain PA of providing a positive result.

[PaintLadie in reply to Cherylclaire]

Yes, I think I will call this Hematologist and tell them to not bother with the test or scheduling me. I really need to go back to the Gastro doc. It is a more sensible route. Thank you for sharing your experiences. It really helps me keep going and stay sane, as these doctors have a way of treating you like your crazy to the point of making you question your own symptoms. I know what I'm dealing with and I need to just keep pushing forward.

[Cherylclaire Forum Support in reply to PaintLadie]

palmier 's reply is spot on.

Wishing you luck, lady

[palmier]

Your doctor should be far more scared to refuse you treatment than to give you treatment, because it's far more riskier for you to not get the treatment. The treatment is very safe. You shouldn't have to make yourself sick again to prove your diagnosis.

[Rosydawn]

Hi,

Long story short is very similar to mine

Diagnosed in early 2000s with PA with IF and antibody results…no doubts there ..one of the lucky ones as definite diagnosis.

After a bout of mild depression and a visit to my new GP post covid, it transpired the diagnosis was not recorded as life long diagnosis and did not show at the top of my notes and he did not believe me about the diagnosis. This despite SI on my records and my appeal during covid to stay on NHS injections every 8 weeks which I succeeded in keeping thanks to PAS.

He took bloods for some routine liver blood work…. I thought.

I chased the results after not hearing anything …good news, but discovered when I got my copy of the results that he had done the IF and antibody tests for PA again and not told me. Noted on the results was that I should start treatment for PA immediately.

Vindicated … if you have PA with the IF and antibody tests then you have PA. Whenever they test you …in my case nearly 20 years later. And no matter what treatment you are already receiving .. in my case SI EOD and NHS jab every 8 weeks and multi vitamins containing B12.

Please note though this won’t be true if they are only looking at blood serum levels …in my case I have been advised privately many times over to reduce my B12 intake based on being over the out of range test. But I still have PA.

Good luck and don’t fear the test results.