Hi I posted a few days ago "Urgently need help" thanks to everyone who contributed and sorry for not replying personally to everyone.
I was doing quite well as my GP very reluctantly gave me B12 (hydroxocobalamin 1mg/1ml) every other day as per current guidelines, even though I have not been officially diagnosed. He phoned the other day and said he wouldn't be continuing them (I have 2 left) as you can imagine I was very upset.
I told him to put it on record that I was feeling much better and does that not show "an objective response" as per guidelines etc but he refuses to continue it. This was on Wednesday, when I felt really well - minimal symptoms, more energy than I've has in ages.
I have taken all your advice regarding vitamins (12 folic acid as GP won't prescribe 5mg, vitamin C etc to help absorb the iron tabs I'm on and so forth).
However, since yesterday, I have felt absolutely dreadful - fatigue, severe weakness in my legs, my eyesight is effected, my pins and needles/burning feet have returned (though not to the same degree), memory issues again etc...
I was fitted in for an urgent neurologist appointment, I spent two hours in Out Patients this morning. My nerves all appear "intact" and the doctor (a very senior one, and very nice) did not seem worried but has arranged an MRI of my brain anyway.
I stated that we had been going down the B12d line, I showed him the articles and he said that these were just journal articles. Even when I said "these are the updated & current UK guidelines, published last year" and explained that B12d can cause neurology problems (I have several) he just was polite but dismissive.
I am at my wits end. I have been back in touch with Martyn at the PAS who has been very helpful and suggested I will have to self medicate now - he has asked me to get in touch with B12d.org and they can arrange for me to have methylcobalamin, which is supposed to better for repairing nerves. I had already emailed them a few weeks ago but they haven't got back to me. Martyn also suggested B12 boost, sublingual, which I have got from Holland & Barrett.
I am worried meantime that my health will go down the toilet. No one is prepared to diagnose me. I have had more tests done at the hospital this morning, rechecked things again and I am sure they will all be normal, especially now since I have been supplementing. I feel I am even further away from getting a diagnosis now and the doctors all think I am just crazy!
I noticed another post "self help B12 injections" and so many ppl seem to go off the radar and self treat. I am always extremely cautious regarding this as how do you all know what is in the preparations and that it is the genuine article, so to speak?
I have no issues regarding self injecting, I am a nurse and been jabbing myself.
Finally, I am concerned that after 8 injections (every other day), after a week I was beginning to feel the benefit and just wondering why, since yesterday, I now feel dreadful and taken several steps back & my neuro symptoms seem to be worsening again? Am I right in saying this can happen?
Thanks so much. To say my life is hell at the moment doesn't even cover it.