When discussing how my treatment is going with my consultant yesterday, he gave me a rather bleak outlook regarding my treatment. As mentioned in my previous blog, when doing the usual strength tests, he found that my right eye still wasn’t able to move up as high as my left. This leaves me with double vision when I look up, although I can fix it by tilting my head at a certain angle.
From the beginning of being ‘in his care’, my consultant seemed to think he would get on top of my condition with relatively small doses of steroids and mestinon. When that didn’t work, we went onto 50mg of the immunosuppressant aziathioprine, then 100mg and then 150mg. It has always felt very adhoc – if there is a plan perhaps I’m just not deemed to be on a level where I would understand it. But I sense there isn’t one.
While all my other symptoms have been under control for a while , I’ve never managed to shift the slight droop of the right eyelid and the double vision when I look up. They feel like fixed features now.
My consultant admitted for the first time, in his own way, that it might never go away. He suggested the options, after a couple of years with the same symptoms, were aggressive treatment to try to get completely on top of it or hold steady as we are as they don’t seem to be affecting me much. In some cases, operations can be performed to fix the alignment of the eyes, but it wouldn’t work for my particular malfunction/quirk. Rather than have a discussion about it, he seemed to have already made up his mind.
The low feeling I get whenever I leave his room – coming from his apparent lack of plan, rushed manner and cold attitude- does make me think about how performance is marked in the medical profession.