An update
 

So, you all should be proud of me for not excersizing for 2 weeks now. Yet this weekend, ive done too much i think and even am having trouble walking from room to room. My pulse goes quite high and its harder to breathe.

Yet Im okay, and i start plasmapheresis on wednesday, I assume for 6 sessions like always.

IM SO ready to feel better, and get in to see a specialist at duke. So nice.

I was doing better yesterday, and when i dont do anything, i feel great. but when i try to hang out w friends, or even go to school, a 3 hour nap is requiered before/after.


My muscle spasms are about the same, maybe a little less frequent, yet i dont think the pred. is going to work, and my doc said cellcept and imuran are next.


How are you all feeling?

Hi Tyson,

I just finished three days of IVIG. Don't feel any different at all. Too bad. I've been on cellcept for a few years now. Started with a Lupus diagnosis and now for my MG that was fianlly diagnosed in September. I take 1500 mg of Cellcept a day. Just increased to that amount from 1000. Don't feel any difference from taking the increased amount either. Just trying to hold my own. As soon as I exert myself I can't breath. So I try to take it easy. Hopefully your docs will put yo on regime that will make a difference. Keep us informed.
Ellen

Hi Ellen,
I've been taking Cellcept for 2.5 years, 2000 mg for 18 months then 1500 mg and we just came to the conclusion with my neuro that it has been a complete waste of money...
Maurice.

Tyson,

Glad you posted an update, I have noticed over time your additude has improved so much, you are handling all of this so well! :hug:

As you have learned by now MG takes a lot of getting used to and the medications are a trial and error type of thing. I hope you find your even ground soon.

I am so proud of how far your have come. :)

Oh, has my attitude gotten better or what.
Haha, i still hate it but, what can i do. Its life or death says my neuro, and i wanna be alive for the things I know ill do, and getting chunky isnt going to stop me from doing so.

How are you all

Hi Tyson,

Glad you are not exercising, and I do know how hard that is. All I've wanted to do is go for a walk, but in 38C(100.4) I think I would collapse and need help!!!! So I've been sitting in my air conditioned unit enjoying the cool.
Kate

tyson, let us know how the plasma exchange goes.

Hang tough and dont sweat a few pounds.