[tysondouglass]

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?

[EllenW]

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

[neutro]

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.

[Joanmarie63]

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!

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.

[tysondouglass]

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

[redtail]

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

[allen L]

tyson, let us know how the plasma exchange goes.

Hang tough and dont sweat a few pounds.