216/365 – Aggressive treatment vs same old 

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. 

6 thoughts on “216/365 – Aggressive treatment vs same old ”

  1. Maybe think about getting a new consultant….

    I know it’s not all sunshine and flowers with MG but my consultant (at CHX hospital) has always made me feel positive about the future since I was diagnosed 4 years ago and has always made me feel like she has all the time in the world to answer my (many) questions.

  2. Horrible when you don’t feel in control of your treatment! What does aggressive treatment involve? I am on mestinon, 15 mg of pred and 50 azithriprone a day but looking to raise the latter and decrease steroids. I also have ivig every 3 months which does tend to keep me mainly symptom free including droopy eyes. Has he suggested this to you? It’s pain free and does really work. I know how you feel though when you want to come out of app feeling positive and come out feeling looking like it’s all a bit grim! Chin up Laura x

  3. Man I see my neuro often I have to say that he always treats me like a person and kindly. He definitely keeps me in the loop on things and I would have to say I am sorry to hear about your situation. My doctor even gave me his cell in extreme situations (like if I am in the hospital or another facility and we need to talk or if I need treatment right away). He proactively calls me about my goals as to when I want to come off meds before I say anything about them which is refreshing. I hope you can find someone like this or that your doctor comes around {HUGZ}

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