Dear oh dear, I’m so sorry to hear this. I wish I could say my years of treatment (or, more to the point ‘lack of treatment’) had been different – but I’d be lying. I bet you are quite nervous being in the UK, for that reason!
Thank goodness I have a GP now, who’s trying his best for me (though his hands are somewhat tied by lack of support service structure). I think you need to change your GP, for certain.
I have however, eventually managed to get on the Diamox / Zantac / Zyrtec protocol (after much pestering and persuading of my GP) and thank goodness I did. It has brought a fair bit of improvement. Two consultants were involved, an immunologist and a neuro-opthalmologist but, taking info gleaned from Dr Diana, I persevered and it paid off.
The trouble is, a lot of our medical signs are subtle and not widely known. It’s up to all of us to try and change this (educate at every opportunity!) and post new ways of detecting problems, on the forum.
I’ve attended public meetings at hospital and spoken out as much as I could, of our plight (without taking over the public forum, lol!!) I wrote 11 posts, to the Dept of Health, when they asked for info from people suffering from rare diseases. I think some of it was taken on board because I have seen some changes but there’s still a long way to go.
I wish you ‘All the Best’ with your PhD, will you be going into medicine ?
Barbara
(UK)