My first round was in Feb I am now on the second round with 4 done and one more to go Tue. What my doctor does is schedule 5 infusions over 3 week peroid. 2 treatments one week, 2 treatments the next week and one treatment the 3rd week. This is done this way because of my age (70). My wife and I now think I have refractory(?) MG. Meaning it is resistive to all treatments. My Neuro said plasmapheresis would be the next treatment he was going to try.
Mike

Mike, I am really glad that your doctor is going to try plasmapheresis next, because I've heard it works really well for some patients who aren't helped by IVIG. I'm also glad that he's giving the IVIG a little more chance to work. I am feeling eerily good--I keep expecting a crash, and it hasn't come. My course of IVIG ended on March 1, and I didn't notice any improvement for almost two weeks. Then I had two very good weeks, and then a return of symptoms, but they've been quite mild. I really don't know what's going on.

I hardly mind this "living on borrowed time" feeling, it's so nice to be on my feet. The other day my friend was having a crisis, so I came with two of my teenagers, and we took her four little boys to McDonald's They are extremely hyperactive and mildly autistic, so even with three of us, it was a stupid thing for me to do. I was in a sort of panic the whole time because I kept counting the identical twins as one person as the flew by in a blur (hey, say that five times quick!) and thinking one of the kids was missing: just the sort of thing that ordinarily does me in. But I'm still standing...

I'm rooting for you to have some similar good surprise.

Abby

That is really what is strange about this disease. Some treatments work for some and not for others. I guess the toughest thing for me is the mental aspect. I have been very active all my life and now I just can't do it. I haven't driven since Aug so my wife has to do all my errands and I never relied on anyone to help me with anything. It's just a real tough adjustment for me.
Mike

I sure do know what you mean. I am seeing a talk-therapist (psychologist) who specializes in helping people in my situation adjust. I think she's been helpful. It's not that she tells me anything I don't know, but she does help me focus in on what particular thing is really bothering me. Also, she gives me some strategies, like how to manage big blocks of time where I'm not strong enough to do much, but where doing nothing really puts me in a funk. (In case anyone's wondering, the strategies are: schedule some activity, even if it's just for 15 minutes, for the middle of that block of time; and also schedule some time where the "activity" is to do nothing worthwhile at all. For me, scheduling that "nothing" time makes it feel more like I'm accomplishing resting, instead of like I'm accomplishing nothing. But these strategies are designed for my particular problem, which seems to be that too much unstructured time depresses me. She helped me figure that out, too.)

Abby

Mike, I agree and am glad that you are going to try plasmapheresis. I hope it works for you so you are able to get some relief that lasts a little while longer than the IVIG did. I have also heard that many people have had success with plasmapheresis. I've never had plasmapheresis because IVIG has really worked well for me, Thank God

MG is very much an individualized disease because it really can affect everyone differently. What really bothers me sometimes is how so many doctors dismiss the possiblilty of someone having MG because they want to put everyone with this disease all in the same box. I just hate to think of all the people in this world that do have MG and could find relief if they could get a diagnosis and receive proper treatment

MG doesn't only affect us physically but also mentally, emotionally and spiritually. I also have spoken to a psychologist before about my mental, emotional and spiritual state due to MG. She was great at helping me to focus on one thing at a time so I wouldn't get so overwhelmed all the time. She also made some very nice relaxation CD's for me and that helped a whole lot because I learned how to calm myself down by focusing on other things such as my breathing etc. Funny how that really does work for me.

I'm glad that your psychologist is helping you too Abby. We all need to learn techniques that can help us navagate through this maze called Myasthenia Gravis.

Gentle Hugs to both of you

Shari