Tyson, Spacey and tingly can mean anything, like bad circulation. Ditto on what Nicky said - get it checked out. They can do the erythrocyte sedimentation rate to see if you might have an infection, along with a CBC (complete blood count).

I think when a person who is so young gets a disease, denial may be even harder to deal with than the disease itself. I don't know if that's what is going on with you but it sure seems like it.

I'd like to "virtually" slap your neuro upside his head. I don't believe in violence of any kind but I am angry. I think he said to go ahead because he is frustrated too. Like when kids incessantly ask their parents, "Can I, huh, can I?" Stupid reasoning to tell you to play Russian Roulette though.

Ask yourself some "what if" questions. Do I want to be on the icy slopes, have an MG crisis and have to be airlifted to a hospital that may or may not know what the heck to do for an MG patient during one? Do I want to expose my disease to cold, and then hot from skiing, only to make it worse? Do I want to lose oxygen on a plane trip (it goes down to less than 80%) and then maybe not be able to fly back home (if you are flying to ski). Do I want to spend an entire trip not being able to have fun because I'm so worn out, unable to breathe or move? Or the worst question . . . Do I want to die?

For whatever reason, your MG seems to be very bad. Could be your age, could be too much of one med, could be something they don't know yet. The "why" doesn't really matter in the big picture because the reality is that you can't do anything beyond survival right now!

I know this sucks. It's not the life any of us want. But it is the one we have. Fighting against it or denying it will only hurt YOU. And those who care for you. I hate that I have this disease but I "negotiate" with it instead of fighting it. I give up a lot to do the few things I really like. Can you think of it in terms of having higher quality things to do, even if they don't involve sports? If you can't, I'm afraid of where you will end up. Seriously, you are on the edge of possibly not breathing at all.

Every life is special, no matter if you are sick or not. No one knows what role any of us - even some not so nice people - have in this world. You need to stick around for several decades to find out what you can do with your life. And to see if there are better drugs or cures out there for MG. But to do that, you need to sit your butt down and chill. It's okay not to play soccer or to ski or go to parties. Those are NOT the things I wish I had done before I got sick now that I'm sick (though I've had MG since birth). The things I wish for involve people, not doing or having things. If you were going to die today, what would you regret? It helps to think that way sometimes. I never say, "Damn, I wish I would've cleaned more."

I don't know what else to say. You have to STOP kidding yourself. Or this disease is going to stop you. We all care about you and want you to have your best life.

Hugs,
Annie