The neurologist was nice: gentle, calm and listened to me, even though I was not at my best and ranted on a bit. Hard to get through 2 1/2 years of stuff, after waiting for 5/6 months (which I understand is quite good for neurology), without getting a bit angry or upset, and the appointment goes so fast. I was given a generous amount of time.
Think I had all the general tests: reflexes, checking awareness of vibration, walking, standing with eyes shut etc. All fine, as I expected. I'm lucky in that sense: have never had problems with gait/ dropping objects/ balance- just tingling, a bit of vertigo, hot soles.
More worried about cognitive problems, personality changes, isolation, sensory overload, mood swings, anger etc : he said he will put me down for a brain scan but not spine (he did know about SACD) which I'm okay with. He also said he didn't think I had dementia which I'm also okay with ! He did look at my symptoms but only really those relating to his field: fair enough.
He looked at my diagnosis from St Thomas': he wasn't on truly comfortable ground with Functional B12 deficiency, but was confident enough to admit to that, and he said that this would be haematologist's area in any case not his. Also fair and I'm seeing her again soon.
He listened to what I had to say about what I felt like, what B12 treatment I had had, what else I had been checked/ tested for etc.
He suggested that I had some headache syndrome (?? -can't remember exactly) -although I have never had headaches, he said it is possible to have this without headaches..... this is where I started to feel that it was all going wrong... he said that it could be another Vitamin B deficiency: niacin and something about co-enzymes (?? - again, not really sure). When I disagreed, he said that he had to respond to my GP (who he said had written a lengthy letter- haven't seen it myself) and this was a possibility.
I did tell him I felt that I had, in 2 1/2 years, gone along with whatever GPs and various consultants had decided for me, each taking one symptom and making treatment decisions based on that only: that no-one was looking at the whole picture or accepting the possibility that any of these problems could be B12 symptoms. That I had had a diagnosis of Functional B12 deficiency, and that the only people who seemed to understand and be aware of this condition were people on this forum who had to find their own way of living with it. I said that I had yet to hear of anyone with neurological symptoms who had been treated according to the haematologist's own guidelines (ie one injection every other day until no further improvement- which should be a decision made between patient and GP since all symptoms are not visible or present every day). He did say that neurological improvements should generally start within a week or two of treatment, and that was probably why he was looking for alternative reasons for my symptoms. I told him that I had accepted that with Functional B12 deficiency, there was not going to be that sort of improvement, but that each time I was put onto 'maintenance' doses, I went downhill. He said that he thought I had put forward a legitimate case but that ultimately, this would be the haematologist's decision. He also said that he would put me down for electronic impulse tests. I now don't expect to see him again unless something shows up in the testing (MRI or nerve). He took a lot of notes so now awaiting copy of letter to GP, and next appointment. Did point out that my job will not be held indefinitely. Went home and slept for 2 or 3 hours.
He told me haematology blood test results:
Intrinsic Factor Antibody: negative
Active B12: >128pmol/L (normal)
Anyone out there who can shed light on niacin deficiency/ headache syndrome ?
Also hope this helps anyone waiting for an appointment. I had other paperwork with me 'on standby' but felt he was very reasonable.