Originally Posted by AnnieB3

Tyson, I think your neuro is spot on about you doing nothing right now. It didn't sound to me like Jana is disagreeing with that (right, Jana?). It's the coming to terms with the fact that you have MG and it is SUPER BAD for you right now that is important.

Having been to the point of pushing MG too far, I can say that you don't want to be there. It takes so much longer to recover, like Jana said. You can take MONTHS to recover and then be "fragile" after that. Maintenance is the key with MG. Hmmm, that rhymes!

A neurologist is not a pharmacist either. Why neuros are the most arrogant bunch of doctors on the planet is beyond me. Did he personally look up Prednisone and Accutane? Mrs. D., who knows about drugs per her career, told you about the risks in another post. Yes, stress - like Jana said - from acne can "take out" a teen! But so can a heart attack. Yes, call your pharmacist and make them look it up not tell you an answer from "memory" or by using their "best guess."

Accutane effects hormones. Hormones effect MG. Maybe the Accutane, even though there are no studies on it and MG, is making your MG worse. I took Accutane - there, I admit it - when I was younger. I remember feeling like a piece of crap. And I've had MG my entire life.

I'll bet your neuro only cares about you staying on Pred, which is very good of him, because he is worried about how you are doing. And he is probably worried what stopping Accutane may do to your MG. I'm personally worried about what Accutane is doing to the effectiveness (too little or too much) on Pred. And I am no expert on this either!!!

The good news, Tyson, is that you are ALIVE. I think you should try to keep it that way!!! And you sound like the most well-rounded, intelligent and funny 17 year old. And good looking.

It completely sucks that you have MG at 17. Totally. Ben Stiller was in this comedy years ago where he was a Rabbi and told this kid - about his voice changing while having a Bar Mitzvah - that he should "love that it sucks." Really embrace it and say "I love that it sucks." Sometimes it helps to call "the beast" as Jana said what it is. That's it's horrible. That it could kill you and quickly. That everything else doesn't really matter - only taking care of yourself does. Because, what if you do have that remission? What if you can lead a more normal life but for now you have to pamper yourself?

Keep the hope and faith. Again, your friends will understand. Just say to them, "Do you want me at that game or do you want me to live?" If you were my friend, I'd stay away from the game with you, sit on a sofa or recliner and watch a game on TV. Or a movie or whatever. And not even talk if it wore out your speaking/breathing muscles.

Your neuro is right about you being "fragile" right now. So do your best to be okay with that. How about thinking about yourself as Merlin, you know, from King Arthur. Maybe you are living "backwards" and you will get healthier with age!!!


Annie

Oh, and a primary doctor can order PFT's too. Just make sure they do the diffusing capacity and the MIP/MEP too.

One more thing. Your primary doc can check the following tests to see how "thick" your blood is: ProTime/INR, C-Reactive Protein and Fibrinogen. To see if the Accutane is thickening up your blood, in combo with the Pred. Pred alone is a big risk.