no MMA testing available

[ozwald28]

Hi guys

I'll try and summarise this situation thats been going on since july and recent developments

-neurological symptoms present

-b12 found to be 150

-PA in family

-Loading doses complete

-IFAB test negative

Still had very bad symptoms so wanted more injections. First dr blamed my extreme fatigue, numbness and other neurological symptoms on my mental health????? I asked for 2nd opinion- pressed for more injections. 2nd dr is much better, I get granted 1 every 2 monthly while waiting advice from haematology. They come back to say i should have 1 injection a month for 3 months, and if there are significant improvements they can diagnose a "functional deficiency".

I said i wanted to rule out PA so requested further tests. Haematology said they don't offer MMA tests, and that the parietal cell anti body test not accurate enough, although if i did have a positive result it would be highly indicative of PA. They said my B12 was not low enough to be considered PA. i was originally told my b12 result was 150 but then on the phone to another dr they said it was 168. my folate + ferritin were OK. On the low end of normal but i have began taking supplements and eating more green veg.

I'm confused by why they can't offer me an MMA + GPAB test to just rule out PA. I'm getting the sense that that is not true, and they are just - refusing to give me the tests because they think its a dietary deficiency. Though they said they will continue with injections if they are helpful for me. After this round of once a month for 3 months, the injections will return to once every 3 months (that is a like a riddle).

Part of me just wants to close this chapter and not bother asking for further tests. Its a battle at every turn. I think if they're offering me the injections, at least i know they are there. I can also S/I if it comes to it, i was just hoping for a straight answer to if i have PA or not, yes or no. Guess i'll not know unless i go private at this point.

[charks]

I think the constant stress of trying to get the right treatment from the doctor is, in itself, making all of us worse. Getting your hopes up only to have them dashed.

[rogergee in reply to charks]

That is so true.

[Nackapan]

I didn't get the testes you are requesting.

Hospitals offer them to firm a functional b12 deficiency diagnosis.

I didn't get an Ifab test either.

I tested negative for parietal antybody cells before injections started

only thing found was a low serum b12

I'm still on prescribed 2 weekly b12 injections.

santioned now by a second neurologist

Gp when quizzed by a nurse why I was receiving 2 weekly injections decided to 'cover his back'

Happy to continue when second neurologist said okay!

my daughter who had s serum b12 level of 81(200-900) megobolastic anaemia low folate and ferritin 9

ifab negative

not repeated?

prescribed 10 weekly b12 injections

did have an endoscopy.

No further tests

It is a battle

[jade_s]

No answers for you, just my own story. I ended up doing all the tests privately as I was also denied. Well, everything came back 'normal' because I had been taking b12 tablets. I was still very functionally deficient - numb from elbow to fingertips, paresthesia, blind spots, cognitive decline. GP and neurologist both dismissed me & claimed I had no b12 issue. So I was forced to SI. I don't regret it for a second. I've had 3 (or 4, i forget) IFAB tests & they always come back negative. No genetic issues, as far as could be determined. So do I have PA? My mother does, so probably... but I know for sure treatment works

[Gambit62 Administrator]

MMA is a test for B12 deficiency/functional deficiency - in the UK it is generally only available if done at a hospital because of sample conditions and time scales on the test.

GPAB is no longer recommended as a test for PA by WHO - it isn't specific enough to PA.

PA is an autoimmune disorder of the gut - not a function of serum B12 levels. Whoever said 150 wasn't low enough should really read the BCSH standards.

[Sparklyjenson]

Hi

Your experience has some similarities to mine. My GP also wouldn’t do MMA or GPC tests. They didn’t think my b12 was low enough and didn’t know what an MMA test was. My symptoms were classic PA and I also have it in the family (none of which bothered the gp). After agonising for months about whether to leave it there or go for private tests I decided to take the tests.

My MMA was high but not high enough to be positive (I hadn’t realised it’s one of those tests with a cut off point - I don’t trust cut off points). My iFAB was negative but my GPC test was positive and I got referred to a gastro who diagnosed me with PA. There are differences of opinion about whether it is strictly correct to diagnose PA without positive IFABs, but I’m not going to disagree if it helps me get the treatment I need.

I feel for you - it’s exhausting fighting to get diagnosis and it’s stressful knowing something is wrong with your body and not understanding why.

If you can afford it I think it’s worth getting the tests done privately. If you have one autoimmune condition it increases the likelihood of others e.g. autoimmune thyroid and PA are often together, so it’s worth knowing.

I only place a 50% weighting on the view of my GP now (from experience). It’s just someone else’s view as a piece of the jigsaw. You know your body best and there is plenty of evidence to support what you suspect- that it could be PA, so don’t allow a GP with cost constraints and no time to think about the ins and outs of b12 to stop you from exploring this further.