Alice,
Do most people get better? I was under the impression that I can pretty much count on being stuck in a hole for the rest of my life. Better would be good.

Yes. Most people do get better and some even very much better

Raven, I completely understand what you mean. There are many variables as to whether or not someone with MG improves. Some people like Jana and me cannot do more than Mestinon and have to "thrive" by giving up nearly everything we want to do and whittle our lives down to "some" of what we need to do.

Heck, we look "okay" so we must be okay. Even my good neurologist is guilty of that, up until I ask him to do a clinical exam. How many doctors come to the erroneous conclusion that their MG patients are okay simply by looking at them in a static situation after they've been sitting, resting their muscles?

Alice, I have to respectfully disagree. That is, unless you're being sarcastic, which is hard to tell this time.

First, there are no concrete studies of MG patients that show that most of them get better. I don't think people like Erin would say they are better (or are you, Erin? ). Second, MG is a relatively progressive disease and there are long-term effects on the body due to that. Third, remission is most often drug-induced remission and not drug-free remission. Lastly, quality of life is not truly looked at in MG - until recently - and it often comes at the cost of side effects of drugs.

And then there are people who do get better - on drugs - only to be struck with cancer from those immunosuppressants.

I think hope is great but false hope is so damaging.

I'm not painting a gloomy picture, only a realistic one. Yes, positive thinking helps but it honestly doesn't change whether my arms will get weak typing this or my legs will get weak taking out the garbage.

After 54 years of having MG, I can honestly say that my quality of life is greatly diminished. I could do things when I was younger that I can't do now. Is that from the effect of aging on the immune system? My B12 deficiency back in 1997-99 making things worse (B12 is needed to make acetylcholine). Who knows. But I'm actually grateful that I didn't know I had MG until I was 41 because doctors might've thrown drugs at me that might've made my life worse or shorter. I'm glad I simply "adjusted" my physical self as much as I could. My MG was mild; now it's not.

There's no easy answer to this topic because there are NOT sufficient studies out there. And, at the end of the day, it only matters what each individual with MG thinks about their life and not how they compare their "better" to someone else's "better."

And if they did studies on how "we" are, would they include all of those undiagnosed MG patients?

Annie

You are right that most studies on MG are done by neurologists, whose ability to evaluate improvement is limited and also have their "wishful thinking" about their patients.

But still the overall impression I got from the medical literature and from patients I talked with is that most do have improvement in their illness with time.

I agree that this may be overestimated. And it is clearly not the "everyone can lead a normal life with minimal medications" notion prevalent in the medical community.

Regardless there are definitely patients who do not have improvement and some who have significant worsening in their condition. (although my neurologist thinks that even such patients may have significant improvement at a later stage, since it is such a crazy and unpredictable disease, but that's his "wishful thinking" not mine).


As you know, I fully agree with that. But, I do think that patients in the early stages of their illness can have realistic hope for improvement if not recovery.


As you know I am very concerned about the management of those patients and do my best to help them. I believe they have a different type of MG and therefore their illness is hard to diagnose and less likely to respond to the commonly used treatments. They do not have antibodies and they have a normal EMG and less typical clinical course because they have a different underlying mechanism of their disease and therefore their prognosis is probably also different. But, that's a different topic...