Quote:
Originally Posted by rogerm213
Can't help but think about my first visit with the Neuro when he said this is very treatable and I am 95% sure we can get you back to normal. Now don't get me wrong I think he is good and I am pleased I found him but when I think back he did not know what "normal" was for me. I do not exactly look like someone who runs, bikes, kayaks, hikes as much as I did before MG.
I think in part this set me up thinking ok we will do this plasma exchange take a few pills and be back at it in a few weeks. Many days I wonder if this is now my new normal. I have seen marked improvement and can go about daily life with adjustments for fatigue and most would now not know anything is wrong unless they see my medicine cabinet. But this is not my normal. Will I continue to see slow improvement or is this it?
I guess only time will tell!
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I think you have raised a very important point. It is important that both physicians and patients will have realistic and similar expectations.
When you first become ill, your normal is what it has been before. Anything different than that is not normal. Anything different than that is a compromise and requires adjustment. Your normal may be more than your physicians normal and still that is how you want to be.
I can fully understand why someone who was able to run the marathon is not content with being able to perform the normal activities of life.
If superman suddenly can't fly and hold buses and becomes a completely normal person, he will feel a significant loss. The fact that everyone around him including his physicians can't fly will not make it easier, at least not at first.