The next step: MMA tests day before and day after B12 injection

[Cherylclaire]

I got a phone call yesterday from one of the haematologists dealing with me: She said that she'd had some results back from the lab: my homocysteine level was 'normal' and after talking to a B12 expert there, has decided that my MMA levels could be raised because of age (I'm 59), and could even be considered by some as within range, because it's less than 400nmol/L . They are happy that B12 levels are normal. I asked her why my hair falls out and my gums bleed (the 2 simplest and most indisputable of my symptoms) and she said that could be folate. GP last year said that my folate level was a bit on the low side and I had 3 months folate and ferritin to address any issues there: when re-tested both were fine. So not folate then.

I told her that by the time my latest certificate runs out, I will have been off work for a whole academic year and time is slipping away without any real answers emerging and no effective treatment for this condition, whatever it is. There is no time left to explore possibilities one at a time (especially those that have previously been ruled out). It's now been over 2 1/2 yrs since I first went to GP.

She now wants to test my MMA the day before my B12 injection, then again the day after. I haven't booked the injection yet or spoken to the haematology receptionist and hoping to tie appointments in with MRI brain scan and electric nerve testing which are next week too.

I am beginning to panic again about all of this. I no longer have anything to ask for, seem to have had my Functional B12 deficiency diagnosis ruled out, don't think I'm the only one unsure of where this is all heading.

I can see myself having to go back to work in September with this whole matter completely unresolved and with B12 injections refused. Still ill though, still unemployably ill.

[Chancery , read this, okay? I know you're getting MMA and homocysteine tests done soon.]

[clivealive Forum Support]

Are you a member of The Pernicious Anaemia Society Cherylclaire ? It costs £20 for a one year membership and they may have some ideas as to what your next steps are.

i wish you well

[Cherylclaire Forum Support in reply to clivealive]

Yes I am, Clive, and thanks for being there yet again for me.

[Chancery]

Hi Cheryl, I'm not sure why they are quoting your Homocysteine test because they should expect that to be normal. It's influenced by B12 injections; as soon as you get those it will come down, whether you have Functional Deficiency or not. That's why they use the MMA testing, because it's not influenced by the injections, per se, and because it's more sensitive and reliable. Also, while they are not wrong about MMA being higher with age, it's described as being higher in "the elderly". I'm not sure 59 is elderly, so that one's up for debate, I'd think. Also, you could argue that with your B12 regimen it might just be influencing it enough to make it not look too catastrophic. With the amount of B12 you've had I'd say that was a possibility.

This all makes me glad I changed my test appointment to just before my next injection though! I'm 60 so I've got a year on you. If my MMA is elevated I expect I'll become elderly overnight too! But it's very good that they are testing yours again, before and after. It means they haven't dismissed possible Functional Deficiency out of hand (although they're trying hard!) so there is still hope. If the two results look the same then surely that would indicate that the B12 isn't working??? However, if they are very different maybe that will be used against you to show that the B12 must be working because it's affecting MMA? Oh, who knows how their minds work? it seems they make the 'science' up as they go along!

Is the MRI and nerve testing for MS, or has that already been ruled out?

[Cherylclaire Forum Support]

Hi Chancery - I really never felt elderly at all until 2 years ago and now... well, my mum's more active than me and she's got unstable angina and had emergency heart surgery! Something's awry here.

I'm thinking if the results are the same, they will say B12 not needed because not effective and if results are different, might as well stick to 1 a month (or worse, the 1 every 3 months that I was on before : NOOOOOOOOOOO!!!) Don't forget it turns mice into junkies (the ones that didn't die of cancer first).

I'm assuming MRI brain scan is looking for lesions- or alternative reason for lack of memory, cognitive problems, attention problems, sensory overload problems etc. The nerve testing was probably because the neurologist wants to ensure that these tests bear out his initial findings- no real big issues with nerves beyond tingling in hands and soles of feet. Which is, to be fair, what i told him -and why he is not scanning my spine along with brain.

Don't know about MS or how it's tested or whether any tests I've had have already ruled this out - blood tests maybe? Had quite a few of those.

And yes, Chancery, you are in your 60's now: well old, unless you are a politician and then you are positively embryonic! Or unless you want to retire......

So busy week ahead for me (I don't get out much!) - B12 and MMA test at Guys,then EMG at St Thomas', MRI brain scan at Guys, B12 injection at GPs and then B12 and MMA retest at Guys again. Then hopefully some answers.

[Cherylclaire Forum Support]

EMG at St Thomas' yesterday: everything in hands and feet fine- all reactions good, and very lovely people- the technician and the doctor. Took time, introduced themselves properly, listened, were sympathetic, explained procedures, were thorough - and the doctor also complimented the technician on doing such a good job. Loved that.

I do get tingling in fingers and soles of feet, but not a 'priority symptom' for me, so aware I have been really lucky to get tested. They asked about my symptoms and are aware that B12 symptoms can be changeable and varied. They had also tested someone else with B12 deficiency that morning. It's such a relief to find specialists who get it about B12. Rare.