My GP has prescribed B12 injections on an ongoing basis for me to inject myself at home three times a week, which I've been doing for several months, and I am topping up with B12 from Goldpharma. This seems to be (just) dealing with my slurred speech, which, as a teacher, was a great worry.
But my palpitations and breathlessness are getting worse, my hands and feet (particularly three fingers and three toes on the right hand/foot) are now almost always numb, and my arms and legs regularly go to sleep. I have permanent burning pain in calves (again, mainly on the right), which seems to be extending up my leg. Am pretty worried about this now. Does anyone have any views on what's happening? I have had a brain MRI, which was clear, and the neurologist, having no other explanation (and having said that there was no indication of subacute combined degeneration) said that if the B12 was working then the injections should continue. The GP has agreed to refer me to a neurometabolic clinic, but am I barking up the wrong tree?
On a side note, since in my view I appear to have the symptoms of subacute combined degeneration, and only my brain was scanned, can anyone clarify whether this means it has been ruled out altogether, or just whether it was too early to tell, or the wrong part was scanned (i.e, wouldn't you need to scan the spinal cord?). The tests seemed incredibly low-tech, e.g., walking toe to toe and checking reflexes – but surely the damage would have to be pretty far gone and severe for these to be affected. Do I have to wait until I can no longer walk for it to be diagnosed?
It's not that I don't trust the neurologist – he is a well regarded professor at a top teaching hospital, who has written a paper on the neurological aspects of B12 deficiency – but something doesn't add up here, and to get 'I dunno' as the answer is very unsatisfying. I don't have a diagnosis of anything (though it seems very likely it's pernicious anaemia), as my bloods were 'normal' (I know, I know...). Homocysteine and MMA were also normal, but were only checked after lots of B12 supplementation.
I have also had Graves' disease in the past. Could this be related to that instead? Could it be something completely unrelated to either?