I'm getting worse since being put on maintenance dose of 1 injection a month- not as bad as I was on 1 every 3 months (yet), but my MMA level is already higher now than it was when diagnosed with Functional B12 deficiency, confirmed by St Thomas' in October last year because of my high MMA. So haematology are now sending blood to be tested for genetic mutation.
Which is excellent.
Also excellent that I will be having a brain scan (MRI) -checking for lesions also anything not B12 related.
What is not so excellent is that although both me and my partner have made it very clear that I am getting worse on this regime and that it is not able to maintain even the poor level that I was at when it was started (against my wishes), I cannot get it improved even in the interim period.
The help that I need is this:
I have tried to understand MTHFR but don't. Need it broken down or simplified. Can anyone help with that?
Need to stop haematologists talking about harmful effects from B12, animal experiments and cancer to me. Need also to stop the rumours repeated to me by haematologists about how extremely addictive it is. These are damaging my chances of recovery and scaring me stiff : not the rumours, but the expertise of the people using these as a valid reason to undertreat my condition. So: any evidence at all for this? I asked three times yesterday for proof...
I am beginning to believe that the only reason that everyone is ignoring the diagnosis of Functional B12 deficiency given to me last year is because they don't understand it and there are no guidelines telling them how to treat it. Showed yesterday's haematologist the Turner and Talbot paper: she pointed out the date (2009 I think ?) and I said no-one's done anything since.
Any and all advice welcome, because I just can't believe that this is the real world, and I'm running out of time.