Getting help from mental health pros can make a big difference in handling everything in MG. The MGF of Illinois had a Fall conference on this with an MG speaker, and two mental health pros. There is a clip on U-Tube along with some other interesting videos about MG. Just search of myasthenia gravis. The mental health one is recently posted. The full meeting is available from Illinois MGFI ***

Bill

Hey Allen,

I haven't had IVIG, but hang in there it may still work as your doctor said. I'll be keeping good thoughts.

Hugs,
Pat

4 hours short of day 7 since treatment ended, nothing noticable.

I took only one dose(15mg for me) of Mestinon yesterday, 2 the day before.
Didnt feel the need for anymore, didnt have any headaches or any problems with my eyes, although I rarely used the computer, didnt drive much, or watch more than one program on tv yesterday.
I did have a total burst of energy, managed to do some heavy work, felt like lead later on, but pushed through it until I couldnt do anything, then finished at 5 pm and basically sat in my chair or in my bed till I went to sleep.

I refuse to accept anymore false hopes, but Im a bit more enthusiastic about not taking as much mestinon as usual. (4-5 doses a day)

I hope everyone is having a strong day, Ive been reading all the other threads, I just cant offer much other than support since I seem to be a minor case of myasthenia.
I have an eye doctor appt. today, should be a real doozy. My vision changes every hour, so I hope hes ready for me.
I have a tremendous amount of respect for my eye doctor after he showed how concerned he was and spent hours upon hours with me every week and kept contacting neuro opthamologists and neuros and insisted they find out what was wrong since he knew something was not right.
I was in there once and he reprimanded his girl and told her dont put any calls through or disturb me until I come out of the examining room. He was so upset from my vision problems, he was determined to get to the root cause. I like the guy, hes genuine, and my eyes are important to him like anyone elses.(hes also downright expensive as hec, but that goes with the territory)

I have been meaning to thank you for the last couple of days for your dedication to this post and sharing your journey with us. I really appreciate it as it maybe a treatment option I have in the future or though it looks like it could possibly be PLEX first.

I hope you get stronger and stronger each day. And again Thank You!

Love
Rach

Hi Allen,

I also wanted to say thanks for keeping up with this thread...It's really helpful to others who have IViG on the horizon!

Nicky

11 days out, I have not taken any mestinon today, its 7:15 pm, rare for me.
I saw my eye doctor yesterday, he said since he last tested me when I was first diagnosed last year, my eye coordination, was much much better.
I dont recall what he explained, but he said my right eye went from a 7 to a 3, and my left from a 6 to a 2.

I did alot of work today around the house. I feel as if Im getting my wind back the past couple of days, no more chills or weakness.

Im waiting on the treatment to kick in, or Im hoping so.

No mestinon today, thats a good thing.

14 days out, remaining optimisitic but I cant say Im noticing any improvement
some days I use my eyes much less and they bother me much less.
I still notice weakness and tiredness in my arms, sometimes even my jaws, almost as if I chewed too much and should have slowed down. Nothing I cant deal with, nothing that alarms me anymore. I dont know if its all mg related and I decided to not let myself think Im getting worse.

Hi sweetheart! sounds like we are in the same boat.........cautiously optimistic.....this damn disease can really take it out of you....

Some people respond really well to IV IG, others the plasma exchange. I hope they find what YOU need in order to feel better (for me it's IV IG)!

All I can do is send you BIG HUGS and tell you that I hope you feel better really soon!

Hang in there, sweetheart! It WILL get better!

Love,
ERin

thanx erin, but I cant say Im feeling all that bad these days.
now that Ive accepted my limitations some days, I avoid the things that set them off.
I learned how to just avoid alot of stress, not worry about tomorrow, not worry about next week, just take a day at a time, get through it, and Ive been doing some heavier work, so I cant say my general weakness isnt from just exerting this old body a bit too much.

Im taking less mestinon now than I ever have. the past week or so no more than 60 mg a day just about, which is very, little as you know.
ofcourse, I havent been using my eyes as much, but still, things are just moving along. I try to explain how I feel to others, its near impossible.
its like a daily thing, things can be horrible one day, and nothing the next.
How do you explain that to someone when they ask you how you feeling lately?