Hello folks, I wonder if I can have some opinions to ponder, please?
I've been injecting on alternate days since 25th August, alternate days, until last Tuesday 20th September, which was my 14th alternate day injection. I have noticed an improvement, for example the numbness in my left hand is now confined to tingling in my fourth and fifth fingers with a bit of altered feeling/slight numbness; I have had increased alertness and I have noticed that I am more dexterous (can put on a fiddly pair of earrings which defeated me before), am more alert, can read a book (last couple of days - it's been a long time since I had any concentration span), and seem to have more energy although the years of disabling exhaustion have left me with zero stamina, so I tire easily and often need to sleep during the day from over-doing it, a trait I am honestly trying to regulate. I don't stumble as much and when feeling my way to the loo in the middle of the night I don't lose my balance anything like as badly. I'm not as forgetful - I remember what it is I've forgotten before going downstairs/upstairs/out of the house more regularly,and several more improvements I don't want to bore you with.
I stopped the injections last /Tuesday because I have been on them for 3 1/2 weeks and Dr C said to do it for 2-3 weeks - and that I'll get to judge when to re-inject; every one or two weeks or so. But I'm not sure. I have read that for severe neurological symptoms you need to inject indefinitely or until the condition stops improving.
My question is, how do you know when you stop improving? Improvements are so gradual that it's hard to tell. Also, with this re-awakening of the systems, so to speak (I forget the term Dr C used for it - anyone know?) one can feel worse before feeling better. But the symptoms are so variable and interconnected - I'm finding it hard to discern what's going on.
For example, I'm feeling rather down; I know this is contributed towards by my situation (complex, but in a nutshell, married to a lovely man but living amongst ignorant, pugnacious, loutish people, and also feeling unable to try to work again at the moment, so very frustrated), but my mood is still unstable - especially since stopping the injections and I still react badly physically to stress. I'm waking up very early (e.g. 5am) and that is fed-up making, I get incredibly hot in the early hours, my lungs are 'chesty' again, the pain in my neck and shoulders has increased, and the parasthesia in my left hand has increased again.
My concern is that I don't really know what constitutes severe neurological damage/symptoms. Dr C told me that I was exhibiting serious problems but of course, not seeing me, he could not say how serious other than to advise me to inject B12. So should I resume injecting on alternate days and how on earth do I know when to stop? I mean, surely the effects are cumulative and if I am damaged by prolonged B12 deficiency over all these years, than might it not take months to get better? And if so, is it ok to keep alternate day injecting for months?
I feel a bit lost in it all. And it's not the most pleasant of treatments, I have to say. I'm really not used to it yet!
Hope all that makes sense - I've been up since 5! (going to try and have a snooze now!!