I had a phone call in the week to book me in for an appointment to see a neurologist on Sunday afternoon (yesterday)
This is what he said:
The nerve damage I am left with is unlikely to get any better as it's nearly 2 years since beginning treatment and that the frequency of injections wouldn't make any difference.
I should do what I can and rest when I'm tired. At 69 I should expect age related problems to start to show up so not everything will be only down to the b12 deficiency. I said I don't want to and I am unable to rest just because I get tired so much and that having b12 injections once a week works best for me, that after 2 weeks I get noticeably worse so the frequency really does make a difference. He said that I will have to take that up with my GP.
The crawling feeling I get on one side of my face is a migraine symptom, I do get a tightness around my head and it affects my eye. I used to get migraines which usually started with an aurra when I was younger which I put down to hormones. He said these are classic migraine symptoms but without the headache and not caused by b12 deficiency.
On the same side I also sometimes get little electric shock type pain, intense but lasting only seconds. This again he said is not a b12 deficiency symptom but the trigeminal nerve and he is arranging an MRI to see what may be causing inflammation of this nerve.
Does anyone relate to these other diagnosis?