With treatment most people can lead a "relatively normal life". You read this statement on numerous websites about MG and I, for one, do not believe it unless you go into remission.

My opinion and experience. Prior to acquiring this disease, your muscles are strong.
Initially, you will have fluctuating weakness in your voluntary muscles and you can have times when you may be able to do normal things, not often, like you have no illness at all. At these times, you will still fatigue faster and require rest sooner because your strength just expires. Before you became ill, you could do a lot more and not feel as bad.

I think we can stay flexible by stretching but, because we do not have the ability to build muscle strength through exercise, the muscles just keep getting weaker.

With treatment or for some other reason you may become stabilized. I am considered "stabilized".

Now, at rest, I feel almost normal but, because I am still not able to build up my muscles, I notice any activities including walking causes my muscles to fatigue at a much faster rate which requires rest much sooner and I believe that even though my disease may not be getting worse, my muscles are still getting weaker and they will continue to get weaker.

So as time goes by, my not so "relatively normal life", my life will become much more less "relatively normal".

Even sitting on the floor playing with my dog causes exhaustion.

Scrubs

I can relate to almost all you say, I have 3 dogs and they can't understand why no more 1-2 mile walks twice per day.

.of course we can all hope for remission but I don't understand that at all (how, why, when, how long, etc) but it seems to me even if you do go into remission it is always possible at any time to come back so to me seems like it is better to be realistic instead of waiting for my normal to return? Also all the with treatment patients can lead relatively normal life statements online make newly diagnosed patients/family/friends expect I take some rx and all is better.

I prefer to figure out how to make best Out of the situation But that is not possible unless I know what situation is.

Thanks again, be well and take care.

MG remission is different from classical remission (cancer remission = no more cancer.) Our bodies create antibodies all the time and some of them attack the neuromuscular junction... this is just the way it is. A MG "remission" is when your condition is well controlled and stable. It is really the wrong term to be using, but we do and a lot of our neuros do too.

As I understand it, the only hope for a real remission is to blow away the immune system with chemo therapy drugs and rebuild it. This comes with its own risks obviously. For me, this is not worth it - my MG is not bad enough to justify this gamble. If it were, I'd reconsider.

I'm in "remission" in that I get through the day on mestinon only and my MG is not getting worse. I work 8-10 hours everyday (from my home office so that I don't pick up anything nasty from the work office.) I can comfortably walk 3 miles once or twice a week and during the winter I can go skiing with my daughter. BUT I still have some rough days and wouldn't think of going for my 5km walk on one of them. The trick is to learn to listen to your body and if it is saying "don't you dare" ... just don't (you'll pay for it on the other end.)

So, yeah, a lot of people would say I live a "normal" life... it can happen.

I think that it is hard for me to get back to "normal" because I am letting this thing get to me mentally. Sometimes I could do more, but I don't because I don't know what to expect.

It is really really hard not to let it get to you because there is so much unknown.
I am not sure what I can and cannot do. I went to courthouse the other day and I think I was weakened not just from actual physical activities but also from stress of feeling "less" than I usually am...if that makes any sense.

3 of us responding your post about a relatively normal life as it pertains to our own individual lives but the reply by alice md is the one that makes sense in a general and realistic way.

"If with proper treatment you will have remission/good control of your illness it is likely that you will be able to resume most of your work schedule. If not, you will probably have to make proper adjustments".

We all suffer from the same illness but in so many different ways.

scrubbs

My cardiologist said he treats several MG patients and we're all different, like snowflakes. I think there are probably a lot of MG patients who take their meds, go into remission, and get back to normal activities and we've found each other as we have the more severe cases that are harder to treat.

So there is a good chance that with proper treatment you can go into remission and resume many of your previous activities. That said, you will have to be careful not to overdo your activities and to be aware of your limits. Keeping in mind that I'm a severe case, I've run into issues where I've thought, "I can do 'that'," and whatever 'that' is, put me in bed for three days. I don't want to scare you away from get back to normal life--I'm hopeful that I'll be more normal with my surgery and the new medicine I'm on, just be aware of your limits and don't try and go too far beyond them.

Jeff