Maybe it's because you "rest" before you see your neuro....

I've found that I have to schedule my appointments in the late afternoon - if I go first thing in the morning, I'm not tired enough for my symptoms to be noticeable.

And maybe you should take a walk around the block right before you see your neuro (or whatever it takes to "wear down" your muscles). Don't do anything that will land you in the ER, but enough to work the adrenaline edge off.

No matter how good a doctor may be, unless he/she actually HAS MG, there is no way they can fully appreciate how we feel. None of us could have understood it until we were the ones experiencing it ourselves - it's still hard for my family to understand, but they're getting better (of course, I'm getting slightly worse, so it's more visible).

I would like to share what my doc found. Hope it helps.

I had soooo many health problems 4 years ago. Muscle spasms, twitches, asthma from acid reflux, severe pain in sciatic nerves on thighs, bouts of weakness that made me feel my life's essence was draining out my abdominal region.

My Doc tested me and found that I had almost no hormones of any kind, except estrogen, since it's everywhere in our environment. Also low in Vit D.

So now I am on progesterone, testosterone, and armor thyroid and vit D. Graduated from being on pregnenolone, and dhea. He said it was from ADRENAL FATIGUE from years of unrelenting stress. Regarding the asthma from reflux, that was from a low thyroid, since this makes your muscles and ligaments weak. The stomach has a sphincter muscle.

Now I am mostly normal. But occasionally have hypoglocemia from the low thyroid. The meds help, not cure. Was told to eat protein. This did not work for me, but I discovered if I EAT OATMEAL with breakfast, even if I don't want to, I tend to avoid becoming weak throughout the day. If I miss and get weak, there is no fixing it the rest of the day.

God Bless. Hope you all get better.

So true!
My trip to the appointments:
taxi ride 1,5 hours long (most of the time I get so tired I fall asleep for those 1,5 hours. Then waiting (sitting on the chair) for the appointment, most of the time I have to wait at least 30 minutes, sometimes an hour. So it's a lot of resting, sitting, doing nothing before I go inside.

And you're right, only someone who actually has it, knows how it feels.

I'm getting worse too, so for me it's totally visible know. My facial expression is gone and I walk funnily. I don't get to see my neurologist in 4 months though...

@Jomamma: well....good for you. But being weak and being MG-weak is not the same. But good news you're doing better!