[Nicknerd]

Hey guys,

Just wanted to let you know what the results were for my tumor....I got them a bit early because I was sorta on my way to a crisis...I called the hospital where I had my surgery to let my surgeon know that I was having major problems eating and talking again (but worse than before)...I ended up speaking with a resident thoracic surgeon on the phone who told me to come to the hospital right away...My FVC was totally fine (I think almost 100%), but they were shocked by how bad my voice was...I ended up being admitted....again...argh...

The hospital where I'm staying is a teaching hospital, so I ended up seeing like 3-teams of doctors plus residents....I'm kinda a shy person, so this was overwhelming :$...Anyway, the head neurologist decided that they shouldn't give me plasmapheresis again because it's too expensive and my breathing's fine (he made this decision without actually seeing me) even though the neurology resident truly believed I should get it as well as the thoracic surgeon on call...Anyway, I ended up seeing that bigwhig yesterday(the head neurologist) and he agreed that I needed it again, but that I'd have to start taking prednisone (no!!!), which I really don't want to take for a number of very good reasons (not necessarilly the obvious)...

So anyway, I had a plasma exchange today...it didn't really help this time (usually I start to notice a difference right away)...We'll see how things go...Hopefully, things will improve..

Now the tumor business...I found out that it's an AB stage 1 tumor...The doc. said that this is great news, and that I don't need to have radiation (thank the lord)...I asked if it was benign, he said not necessarilly, but my survival rate is 90% and I really shouldn't worry about it ever coming back...phew...

Two interesting things happened...The nurse who did my FVC turns out to have a sister with Myasthenia gravis, who had the typical eye weakness but also extreme bulbar speech, worse than mine...He said that after she had her thymectomy, she took one medication that put her into remission and she's doing awesome now, 6-years later....Another nurse I had had Myasthenia Gravis with a thymoma at the same stage as mine two years ago...She also did pretty badly 1-week after the surgery (like me), but is now in remission...You can't tell that she has it at all! She had a plasma exchange, was put on prednisone, tapered off, and is now on Imuran...She said that the only bad things that have happened since her ordeal two years ago, is that she got shingles (from the imuran, I'm guessing) and she gets a bit fatigued at night...I'll take the fatigue, yes please, but spare me the shingles! lol..

Anyway, I feel hopeful seeing another MGer in the flesh who is doing great!

How are all of you guys doing?

ttys!
nicky