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Are Good Days and Bad Days Normal

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Old 04-29-2018, 07:16 AM   #1
Rechellef
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Default Are Good Days and Bad Days Normal

I am new to MG, so I am still trying to figure out my own dang body. Is it normal to have days where you feel like you could run a marathon and others when it is hard to just walk up a flight of stairs? The other day I felt defeated and could barely lift my arms to do my hair (Mestonin helped, but not as well as usual that day) and now today I only feel "typical" weakness (which for me is in my neck and legs and sometimes my arms). I am formerly very athletic (used to run 40 miles a week, triathlons, etc.) and am very driven which is my biggest weakness because relaxing is not something I do well. All I could do was force myself to rest and cry because I am not used to my body "not working" right. Is this now my new normal?
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Old 04-29-2018, 08:22 AM   #2
4-eyes
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No, it doesn't have to be this way. It takes a while to find what works best. Sadly, it took me nearly 20 years to find my miracle med. It's all about what you're willing to risk to feel better and how much better you want to feel.

Be persistent. Do your research and find a doc who is willing to explore options with you.
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Old 04-29-2018, 08:31 AM   #3
Rechellef
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Quote:
Originally Posted by 4-eyes View Post
No, it doesn't have to be this way. It takes a while to find what works best. Sadly, it took me nearly 20 years to find my miracle med. It's all about what you're willing to risk to feel better and how much better you want to feel.

Be persistent. Do your research and find a doc who is willing to explore options with you.
If you don't mind me asking, what did you find out what works for you?
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Old 04-29-2018, 10:32 AM   #4
4-eyes
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Rituxan. The catch to that is that you must have I think at least 4 treatment failures over time, a neuro willing to prescribe it, and the willingness to accept side effects that can include death from taking it.
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Old 04-29-2018, 07:46 PM   #5
AnnieB3
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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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Old 04-29-2018, 07:52 PM   #6
Rechellef
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Thank you again for your help. I'm trying to listen to my body and don't know what overdoing it feels like yet until I can do very little. I just push and push until it's too late. We are in the process of moving and my husband is only home every 4 weeks so I have almost no help. I've come to the realization that I may just have to hire someone to help me pack. Every day is a learning experience about what I can handle and what I cannot.
Quote:
Originally Posted by AnnieB3 View Post
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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