Hey all..not sure what is happening..now I'm not as weak and don't feel like I should be wasting peoples time. Should I expect myself to be 100%? Should I worry about being weak for my appointment or is it not going to matter? I was dead weak 2 days ago now I'm strong..so confusing..

I hereby diagnose you with an acute case of the Myasthenia Maybes.

Not only is the disease variable, but the variability is variable. Go to your appointments, don't down-play how weak you were, just because you're strong now, and see if something can be done to stop this from happening to you again!!

Abby

Agree with Abby. You are not wasting anyone's time so don't doubt yourself. You should go to your appointment.

Welcome to the wacky world of Myasthenia Gravis!

Tyson, even after 9 years I go from amazing one day to dead the next. Don't worry about being weak or not at your appointments, and not being 100% I am very rarely at, no Iam never at 100% although in my mind I feel like I am. I definatley agree with Abby and Shari.

It would be very useful to your doctor if you kept a log of your daily symptoms. It would show trends with linking to activity levels, how well you sleep each night and what you ate that day to see what impacts your MG. (include your meds, and any new things or tapers off meds etc). Include illnesses like colds, flu or food borne infections.

With an elusive disorder such as this, anything you can do to clarify your daily life for your doctor will be helpful in making future medical decisions.

I agree completely with mrsD about keeping a journal. You have been treated by many different docs for your MG - which puts even more responsibility on you to keep great records.

Re: your strength....perhaps you hadn't worked out for a few a days prior (because you had been feeling so weak) to your strong days. I encourage you to keep a schedule of you workouts versus your strong/weak days. I'm not suggesting you eliminate work outs...but rather, learn how to best integrate them into your life to try to help limit MG peaks and valleys.

Yes, and you can be creative too.

Different ink color for different strength states. So at a glance you can see strong days, moderate days, weak days.
A small calendar included could have the color put in on those dates, as well. Doing creative things, can make it more fun and less of a homework type chore.