Hi Tyson,

Yep I do understand, being so full of life, doing what you love,then its all taken away.
Nicky is right, there is hope. Mg is so different for all of us, my neuro is always shaking his head at me, cos I don't fit "his" description of mg, I don't conform!!!
Nothing can make up for the loss of your life playing sports, being young healthy and 17. But I do agree with Allen, try to stay focused. Its hard, we all feel the loss of something..................... I know these words seem hollow, but I feel for you.
Keep comming and venting here, I know it helps me to talk to you guys, most of you half way around the world, but you are all so caring.
Kate

Nicky- I had no idea you too had a thymoma. It wasnt cancerous was it? They tend not to be.

Thanks for the info on the Thymectomy and gonig through a crisis, or exasturbation after having it done, yet i dont understand why because i had the plasmapheresis done right before surgery I should have been as good as a god, haha.

I know there is hope, and thanks for keeping it in check, yet it seems so far away, i just want to be normal again. Or atleast for my last year of high school. But its okay. Im able to deal with it. Im calling my doc. tomorrow to see what he wants to do with all this medicine, im sick of it not working, i want to try cellcept. Any ideas on the cellcept?

My arms are getting so tired jst sitting here typing, I couldnt hardly drive today, which is new. My arms get too tired, so that i have to switch off and on with each arm. Im about to sleep, and see if im able to go to school tomorrow..I also just choked on some water, so im thinking i might be heading towards a crisis if i dont watch myself.

Thanks for the encouraging words Nick, they really do help as i often dont have anyone to talk to! But you guys are aways here!

I know that when the medicine kicks in, it will be much better, yet waiting for that as you said is very frustrating.

Thanks again.

Kate-

Your neuro should be more supportive, im sorry that your neuro isnt much help in that sense, i wish you could go to mine, i love him for the most part...but he didnt even mention anything about a crisis happening, because he never thought i would come to one, but he messed up on that level because it took me 3 days and choking before i went to the ER. You guys helped me more than he did in that sense, but he is very good.

Again, im sorry about your neuro, im glad you can come here and vent, as we all are, for this is definetly a hard thing to deal with.

I know, allen is all respects is correct. Keeping busy is what needs to happen so that I can keep my mind off of it. Ill try my best. Dont worry, the words arent hollow, they are the truth, and i understand fully. Thanks

hope your doing okay.

Allen- Thanks for being supportive, and I completely agree with what you said. And i try very hard to do so, yet sometimes sitting at home while my friends are out, and im just too tired to sleep, or doing anything, it gets hard. But for the most part I dont let this shitty disease rule mine either.

Stay strong.

Hi Tyson,

My thymoma wasn't cancerous, although my surgeon thought that I might need radiation (so maybe it was, sorta?). My oncologist said that I didn't need it, so I went with her advice. I had also come across some information I picked up in Sept. about a conference by WHO that took place in August re. thymomas.

They decided that anyone in stage 1-2, with a type A, AB, and sometimes B (stage 1 only I think), don't require radiation just because the stats. are the same for radiation/no radiation in terms of re-occurence. Something like 90% it wont come back. The odds were in my favour. My tumour was also pretty big, though, and was growing towards my heart like yours. My thymus was also really hyperplastic.

Do you know what type of thymoma you had, and the stage it was in?

Cellcept might be no good. There's an increased risk of cancer, and because we've already sorta had cancer (albeit a very treatable, low-risk type), it would be too risky. My neuro. wants to try Imuran first at least because the risk of cancer isn't as high as cellcept.

About the plasma exchange. Precisely the same thing happened to me, as well as that nurse I had met at the hospital. i had plasmapheresis right before my surgery. Prior to this, I had IViG, and a round of plasmapheresis just prior to that-so lots of infusions/blood exchanges. You'd think I would have been like King Kong after the surgery, but two weeks later, my symptoms were much worse- the same type of symptoms, but more intense.

I then started prednisone, and there wasn't much improvement for a while. In fact, I felt weaker early on, and developed new symptoms (like ptosis very rarely in my left eye, and difficulty swallowing). I also found breathing more labourious.

Sooner than later, though, this started to get better especially with the addition of Mestinon SR in the evenings and mornings, and a plasma exchange here and there. The plasma exchanges work much better for me now than they did pre-op/prednisone, and last much longer. I guess the antibodies are getting lower, and less 'efficient' with the pred. in addition to the exchanges.

Just know that you will get better. It takes time, and some messing around with the meds. a bit, but have faith. At the same time, it's good that you're paying close attention to your symptoms. The choking on liquids has happened to me too. You have to do things very slowly and consciously when you're feeling weak like that, which I know you will. Leaning your head down, with your chin sorta touching your throat helps a lot with the swallowing. It closes off the opening to the windpipe. I also sometimes push on my throat with my fingers, sorta lifting the muscle, when it lags while I'm swallowing. This helps a lot too.

Is your palate weak too (nasal speech)? When that happens to me, that's when eating/drinking becomes very labourious. When things are very difficult, make sure to get to a hospital.