Hey Guys- hope your all doing well. I wanted to give you an update on me.


I quit work it was too much. Which is alright, but I have a car payment and I hate having my mom have to help me..oh well though could be worse!

I am still on imuran...not looking that promising. Going on 300mg...still not that strong- having to take naps, bad headaches, easy infections, double vision bad at night, etc.

Im still on 50mg of prednisone...im starting to wonder if this isnt MG...something else maybe?

Im having infusions montly (IVIG) 4 days x 40g of gammaguard.

I am having really bad gas...coming out both ends, and it seems like GERD or something, because whenever i eat or drink anything- its always coming up in gas form. I always feel bloated and im not sure what to do about that I guess. I assume its just from the prednisone.


I tried getting into a trial at Northwestern for a stem cell trial- rebuilding my immune system with my stem cells after doing chemo- they said no because- only because I dont have a + antibody test....everything else I met for criteria.


Im winding down my last days here in Maine- Im going to mexico in a few weeks, and then moving to california.

Hope your all doing well- let me know!

Hi, Tyson. I didn't know you were seronegative. There sure are a lot of us. It makes me really doubt the statistics I've read.

I was also doubting my diagnosis, but my response to IVIG helps me to be confident that at least this is an autoimmune disease. And since Imuran treats not just MG but autoimmune diseases in general, that's all I need to know. It's the same with you--you're on IVIG, prednisone and Imuran, which are all treatments for autoimmune diseases. Does that make sense? It's just what seems reasonable to me. At one point, before I got my diagnosis, my neuro even brought up the possibility of using IVIG diagnostically, but he ended up referring me to another doctor instead.

I'm sorry to hear that things are so hard.

Abby

Abby- thanks for your response. It could be much worse- for me things are going quite great right now. I am happy i can exercise. I just would like to be symptom free w out all the side effects. Wouldn't we all...hah. I'm getting tested agin for the antibodies on Monday. Maybe it'll show up.

Like i said- having gone through what I did last year- I'm happy just to be able to breathe on my own.


Hope your doing well

Yep, that's what we want, all right! But it could happen. I am doing especially well, thanks. I'm in an IVIG-induced semi-remission, and started on Imuran, which isn't giving me any troublesome side-effects (except, weirdly, that it makes me less hungry, which is nice for me, since I find it difficult not to gain weight).

Let us know how your antibodies test comes out. I have tested negative three times.

Abby

Tyson the gas could be a yeast infection. Have doc check it out huh?

Good Luck Tyson, sometimes finding a combo that works for anything can be full of trials and the more doctors you involve and the more meds the tougher it gets.
I fight a lot of gas also - I try to be careful and not drink much coffee or soda as they can irritate my digestive system and then meds seem to really have an adverse effect...
If you drink milk you may need to cut that out as well - experiment...