Hi, I really need information on the other tests that can be done other than the stantard B12 and IFA (I was negative for IFA). I have been having loading doses for last 3 weeks, this is my 4th week of 3 loading doses. I was referred to a haematologist after a neurological examination arranged by the Dr surgery, I was never sent any communication or saw the haematologist, I simply recieved a call to say the Dr recieved a letter from the Haematologist ( I have not seen him or been given a name), stating that I should have loading doses until there is no further improvement and then should have injections every two months. It also briefly said that some patients are helped with sub-lingual lozenges and in some cases may be an alternative to injections. This was mentioned to me by the nurse, I said "no, that would not 'replace' the injections and most sufferers have to use these things in between just to help keep them going until the next injection. I attended for my jab yesterday and was told that the Dr wanted to re-test me, I pointed out I was not happy to be re-tested as it is pointless as it will show high after loading doses and was a false high as it does not show the actual 'active B12'. I was then told that if I refused the test, she had been told to tell me that the injections were to be stopped! I was given no choice. I am scared, I have just started to feel less fatigued and have some energy. The fuzzy vision is better and tinnitus is far less, but I have severe and long-standing neurological damage already. I have damage at the top of my spine which was put down to arthritis I think about 2007, I was only about 44 years old and no-one wondered why. I could do with some information on the other tests that can be done so I can ask for them or have them privately if necessary and also any help to write a letter to my Dr. with links to the guidelines perhaps or any material which might help him to understand he cannot stop my treatment. I feel I am not believed, that the Dr is ignoring the neurological issues and thinks I am making it up, he would not refer me until I had seen a neurologist and I was subsequently referred by the neurologist but now he seems to want to ignore that. I was refused a copy of the Haematologists letter. I am also concerned that I was 'threatened' with withdrawal of treatment if I refused a re-test.
All help gratefully recieved.