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Old 04-29-2018, 07:46 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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While variable weakness does not have to be the way of things for an MG patient, the unpredictability of the disease can make predicting the course of the disease difficult.

For those of us on Mestinon only, the reality of our day is different than for those well-controlled on meds. But there are those on meds whose symptoms are not well-controlled! This varies from person to person.

A person with MG still has to manage activities by alternating with periods of rest or sleep. That is the smart thing to do! I was very driven as well before MG became worse—and I ended up in the hospital with a crisis! The worse MG becomes, the longer it takes to recover or go back to one's baseline.

I suggest meditation. That will help in many ways. I used that to get through my crisis (to stay as still as possible). Quieting the mind, while doing the same with the body, helps tremendously! Meditation isn't a thinking exercise as much as it is a feeling one. Meditation has also been proven to reduce stress and help the immune system in general.

What muscles are weak depends upon which ones you use. Although, you'll find that if you walk a certain distance, the arms may end up weaker than the legs. Socializing, for example, uses a great deal of muscle groups (we have 640 skeletal muscles). That activity can wear a person out for a couple of days afterward. I always rest after any activity, giving my body a chance to "recharge" itself.

Your new normal will not be the same as others. Give yourself some time, and time for the drugs time to work, to know what that will be. But remember that MG can always surprise us! Weakness can also come on so slowly that you might not know how weak you are, especially in the summer/hot months. Cooling down after any activity in the hot weather will help to minimize more weakness.

Only you can decide what drugs you want to take or what modifications you need to make in your life to adapt to MG. They are finding that drugs such as Rituxan are better for some MGers. I hope you can have a good conversation with your neuro about all of that.

Having this disease, whether on a lot of drugs or not, does change one's life. I know very few people who live a completely normal life with MG. But there are those who are symptom-free (on drugs or off), or have few symptoms. I really hope you can find the right balance for you!


Annie
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