Quote:
Originally Posted by alice md
first, I fully agree that having realistic expactations is a relief. being given false hope is just confusing and dissapointing and doesn't let you really deal with what you have to deal with. and its great to find someone that is ready to honestly discuss it with you and answer all your questions.
but I also have to admit that I am a bit confused by what you say- 
I am effectively in "Remission" as far as Neuro's measure remission for MG.
are you in "remission", which I would think means no symtpoms or signs of the disease, or are you not?
and how do neuors measure remission? did he explain it to you?
alice |
Sorry Alice,
I'm not a medical professional, my choice of words can often be off.
He did not explain how to measure it beyond minimal signs and symptoms that are completely controllable with low dose medication and are not interfering with your life. He may have simplified things for me as a way of resetting my expectation of remission and I may have misunderstood what he was saying about it.
I can reach over my head and get stuff down from the cupboard. I can walk as far as I want (when my lungs aren't misbehaving
) My head doesn't drop because my neck cannot hold it up. I don't have double-vision from not being able to hold my eyes in synch. etc. Right now, the only symptoms of the disease I show are a gravelly voice (left vocal chords are effected) some difficulty swallowing some foods (that were not a problem before I developed MG) and if I don't take my mestinon my speaking is effected at the end of the day (marble-mouth). The only limb function failure I had during the testing was the pectoral muscles controlling the left arm -- they weakened quickly under use.