The haematologist told me, at the end of my first appointment, that I should write down any questions I have for her and we will go through them next time. That's next week.
Although my test results are:
Intrinsic Factor Antibody: negative
Active B12: normal
I still have the following symptoms:
hair loss, bleeding gums, sore/split mouth in corners, l/h hip pain, back pain, osteoporosis of the spine, daily diarrhoea, sore hot tongue (swollen/ piecrust), thrush-type tongue and throat infection, thick mucosal saliva, white noise with draining tingling under skin, tinnitus, pins and needles tingling soles of feet and hands, weak arms and legs, sore stiff feet on waking, yawning continuously (air-gulping) to no avail, dizziness, impatience, mood swings, angry outbursts, inability to focus or concentrate, inability to multi-task (even simple tasks), skin hypersensitivity / numbness and lack of feeling, crying, inability to do anything else if having a discussion, memory loss, sensory overload, cognitive inabilities, solitariness, afternoon naps and exhaustion.
I have already had a diagnosis, confirmed by St Thomas', of Functional B12 deficiency, but it seems that everyone wants to re-diagnose me with something else ! All of these symptoms seem to come and go but I haven't had a 'clear day', can't establish a pattern despite 'obsessive' recording (!), and only know that 'maintenance' doses, however generous, are failing to do their job - unable even to maintain a level in me that I really can't cope with.
How to get anyone to believe me or listen to me, when latest test results seem to reveal nothing helpful ? Do I really have to pin my hopes on the brain scan ? What to ask for- what's left ? This really is the last chance. Any ideas would be welcomed.