Re: QOL: I think mine has improved since I stopped ending up on the floor so much. I'm not stronger, but I have learned somewhat how to avoid collapsing. When I am that weak, I just need to get to the nearest couch or chair before I go down, and I do that by locking my knees and walking with stiff legs. That works because the reason I end up on the floor is that when I bend my knees, even just a little to take a step, I don't have the strength to straighten up again--so I go down.

Abby

Yeah, but you guys, neurologists say you can live a completely normal life with MG.

Finding myself in mainly the 4's and 5's was depressing. I can be in denial about it all on a daily basis but to see it in black and white is too real.

AnnieB, that's what my neuro said...I still haven't figured out how a person is supposed to live a normal life, because nothing is normal about MG. I like the shaking-the-head-no smiley.

Abby, I am like you...I don't think I am generally stronger, just learning new ways to live and to react.

This is a question that really bothers me. how many patients do live a normal life with MG? and by normal I mean real normal.
Because it makes a big difference, if people like me are a very small minority- a very rare extreme of a relatively rare illness, and then it is very hard trying to convince of the importance of finding better treatment approaches, or if most people with MG are like that.

I am not sure any one has the answer. I am also not sure that there aren't many more patients with MG like me (and Chloe Atkin's book made me think it ever more) that don't even know they have MG as this is not even considered, or that their MG is "ruled out" even if it is suspected.

alice

After I had my test, my husband was in there with me, he asked the doctor who gave the test how will this affect me if it came back positive. He said, " she can live a normal life as always. I have patients that still play football, baseball, and their life has not changed." They are better than I am or either I am more of a whimp. Going to work everyday is just about all I can do. Cooking supper, cleaning, etc before bedtime is out. That certainly isn't the normal life I had before. I ask the same question, what is normal. I missed the boat somewhere. Desert Flower. I can relate to your post. Something has got to change. I'm tired of being tired and trying to find a better outlet. I'm just tired of people at work thinking "get over it." By gosh, I am trying and heaven forbid don't even think about saying "I am really tired today." Anyway, everyone try to have a good day today and take care of yourself. busy

The fact that someone with MG plays football or baseball (or tell their neurologists that they do) does not mean that they have a normal life.
I lived a "normal life" for more then 3 years- I continued to work full time as a physician, bring up my two sons, and even go to conferences abroad. but, my life was very far from normal. I would frequently "crash" in the middle of clinic, or have one of my patients ask why I ran up 8 flight of stairs, instead of taking the elevator (needless to say that I reached this level of shortness of breath just from walking from the elevator to him room). etc.

I recently found out that when my WLE neurologist admitted me for plasmapheresis and steroids, he wrote to the plasmapheresis team that if there is no hospital bed available I could easily have it as an out-patient as I am working and was able to fly over, so obviously am not very ill. At that time I was officially working but not much more then that, and required respiratory support after every minor effort, and obviously during a plane flight.

so, I now take it with a grain of salt when neurologists tell me about their patients that play football and lead a completely normal life.

it is true that you can do almost anything you want with MG, the only question is what is going to be the price. so possibly that avid football player spends a few days in bed after each time in order to recover.

the president of the US came to visit Russia. But, what he was most impressed with was a cage in the zoo in which a wolf and a lamb were happily sitting together. How do you do that? he asked. how did you get those two animals to be in the same cage so peacefully. Oh, this is very easy they replied. it depends on how many lambs you are ready to sacrifice.

At my last appointment, I had a very intelligent young resident interview and examine me prior to seeing my doctor. She asked how MG has impacted my life. I told her that I had changed -- my interests/hobbies were now focused according to my current, limited abilities -- my life NOW is completely different from my life THEN. She seemed to understand. I think she will become a good doctor.

After reading this thread, I wonder........................am I part of the problem? Have I adjusted tooooooo well? When I go to my MG specialist, I no longer complain about what I can't do -- I've accepted my limitations -- I'm happy for what I can still do -- and rejoice for the little improvements (usually temporary) that I see along the way.

Attitudes like mine really COULD be confusing to doctors. Right??