have any of you gotten to that point where you almost don't notice your symptoms because you've dealt w them so long/vigorously? I feel like to an extent that's happening, w side effects too. it's like I know they are there but have to block them out just to make life go on- unless it's debilitating stuff like breathing, but limb weakness and ptosis are always there for me and was just wondering if you guys felt the same.*


go to Chicago in less than a month, and they are quite sure I am qualifying. yeehawww.*

My disease is always changing. I don't know if that's the way it will always be, or if it's just how things are in the beginning. I have my balance back--the muscles in my sides are stronger. But my legs are so weak now that I've asked for a prescription for a wheelchair.

Every time I have a new set of symptoms, it gets me down emotionally, like a milder version of discovering I have the disease. It's something to get used to all over again.

Abby

That's what I have been doing the past 30 years until the summer heat made the problems intolerable. Every five years or so I would pursue a diagnosis due to some worsening. Nightcrawer refers to the way I was going upstairs at night, thought it was just conservation of energy, until someone else mentioned something similar. Stiffness has been lifelong and I don't notice it unless it's not there, like the two times I took steroids. So yes you can ignore problems and sometimes pay the price for trying to do today what you could do yesterday and might have been able to do tomorrow except you overdid it today. ;-). Someone's neurologist said you are caught between overdoing it and feeling lazy because you think you could have done more. NC

Sounds like a smart and observant neurologist.

Hi Alice,
I understand that I was quoting you (not a neurologist)! Should have known it was an MGer! I haven't met any neurologists yet that understand that. But I sure do. NC

you were quoting me?

well, at least I am consistent.

it's worthwhile to look for one that does.

Yes, it was something shared on another site and now I have the whole post, copied by someone who has been here longer than I. Your posts make a difference. I am looking for a neurologist and have high hopes (once again). At least I am going to a place that has seen the range of the disease and doesn't dismiss everyone that is seronegative or with neuromuscular disease as "not my field." Seems some medical fields are getting awfully small. :-) NC