Hi and welcome! You're not being paranoid! You are facing a disease that you are not "acquainted with" yet.

Myasthenia gravis is all about weakness. For example, for us women, drying our hair might be one of the first things we notice makes our arms/neck weak. Any repetitive or sustained activity will make the muscle weakness worse. The more we do, the more of the muscle "gas" called acetylcholine runs out. Our muscle gas tank is on low to begin with so it takes less effort to run out. Antibodies attack the neuromuscular junction, where the acetylcholine goes from the nerves to the muscles. So there are fewer places for the gas to go into the muscle.

The way MG makes me feel varies from day to day. With a little muscle weakness, I just can't do as much. My arms feel, well, weak. When the weakness is more generalized, I sometimes feel like I'm walking in quicksand. Like it takes so much effort just to move. There are times when writing a check is almost impossible and others when it's just fine. Muscles can get so weak that they can twitch, cramp up or spasm. When the chest wall/breathing muscles get weak or spasm, I know I'm in trouble and my breathing will be affected.

MG is different for everyone. Some people have it really bad while others have it mild. Resting between activities helps a lot. Staying out of the heat, which can make MG much worse, really helps.

It can be really deceptive thinking you have only ocular MG. Very few people do have only that. There's no guarantee that it will not progress. I hate when doctors act like psychics and say things like that. He cannot say that it won't progress!

I guess the way you can tell about muscle weakness is if it is variable. There will be some days when I walk up the stairs (one flight) and am relatively okay. Then others, I start walking more slowly because I can barely lift my legs up. During my myasthenic crisis, I couldn't walk up stairs at all. A crisis is when you get much weaker overall - but don't freak out about that! Some people never have one or only one.

You have every right to be worried, especially when a doctor is not giving it to you straight. Have you tried to find an MG expert? The MDA usually lists the experts on its website: www.mdausa.org For more info, you can go to www.myasthenia.org too.

MG feels different every day. It's not "fun" to have it but I've learned to live with it. I do have to adapt things I do. I have chairs or barstools in almost every room so that I sit instead of standing because that takes less muscle energy. I often use paper plates instead of "real" ones so I can do less dishes. Stuff like that I've done to adapt my life so I have time to do what I want.

Have they done the antibody tests? EMG's? If not, they should. My neuro said that he's had patients who don't feel weak and have really bad EMG's.

Just try to relax about it all until you know more. Definitely consider a 2nd opinion with an expert. Talk to your family/friends. And take a deep breath and tell yourself that it'll be okay. Facing a disease is very hard and you need to give yourself a break!

Annie