I will try not to sound too down as I know I will perk up and I know there are many people on here who are suffering healthwise a lot worse than I am but I am rather down and confused on where to go next. Anyone who read my previous post will see that I have an open minded GP who admits to not being a specialist in this area, I have been most grateful for this as she agreed to a trial dose of 5 months worth of monthly b12 injections (no loading dose). I left it until my 4th dose to see if an improved pattern ensued which it did, in fact a couple of the months felt like a miracle had happened. She agreed that I seemed to be responding to the treatment and she would speak to the lab about further testing. Well I've spoken to her this morning and she has spoken to the haematologist who said they can not justify further testing for PA because my levels are not below the lab requirements in this area 180- but they didn't say I should stop treatment as I'm responding!!!! Anyhow I discussed with GP about how many people go on to have other tests first for MS etc for all the symptoms and how much money that must cost the NHS and they end up being confirmed as PA or b12 def anyway or just get so ill they never recover and have treatment on the NHS that could have been avoided. She didn't disagree but said there was nothing she could do because they refuse to let me be referred! she suggested that I might think about private testing? That's all well and good but which tests to have first?? the actual PA test for antibodies etc I can not afford unless I borrow the money or sell something and is that even the right way to go about it?
I'm doubly frustrated as this month after my jab, which is the 5th monthly one my symptoms didn't go away and I have felt really rough with skin burning, wobbly quads sore mouth ear aches 10hours sleep everynight and still drained yada yada yada, you know the story. My question is can this happen some months, does that happen to some of you? as its left me doubting myself and my resolve, should I be fighting this battle, will I be left with egg on my face? I'm so fatigued with trying to collate all this info and doing something constructive with it? its also hard to live with guilt, sometimes I feel I should just give in as I know there are people who have more obvious and immediately life threatening or life changing illnesses? Sorry if I sound like I feel sorry for myself, I don't I love my life and have a wonderful family and husband but I just worry that quality time I could be spending with them is being wasted if it is PA or b12 def and something could be done to help. I know I'm very lucky to have an injection per month but do you think this is just putting out fires because I didn't have a loading dose?
Anyway sorry for the long post and a big thank you to anyone who took the time to read it.