Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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cassynchris 02/12/2012

I would like to know who is having a hard time keeping there jobs. Who is still working and still have problems working. Also like to know who is unable to work. Why I am asking Im having problem with my energy. I also have been sick with a cold and have never been this sick with a cold. I have not worked for a week and I feel like I am not ready to go back to work. My body is telling me I'm not ready....but my mind said I can't afford to stay out of work. I don't know what to do. I see my doctor tomorrow and I don't know what to do. I have not been happy with the way I have been feeling. I have a job that takes a lot out of me. By Friday all I want to do is sleep and nothing else. I just don't know how long I can just do that. I need alittle advise. Thanks a lot.

Cassy

deleted_user 02/12/2012

I am unable to work at all at the present time, however, I am hopeful that I will be able to return to teaching next September.

txkiki53 02/12/2012

I still work, but there are days I have to talk myself throught the day, sometimes minures and seconds as the day passes... I so understand.
Annette

deleted_user 02/13/2012

I won't go into detail here. I don' t work and haven't been employable since 2003.

My DS journal says plenty about my issues. Hope for you to have a clear and easy decision. Mine was.

tesb 02/13/2012

Its difficult to give you an answer every one id different depends on how severe your mg is I have worked when in remission but at the moment cant even get through the day at home. I say trust what your body is saying to you. Thinking of you

annkemp 02/13/2012

I worked 3 days a week a year and a half ago. I did alot of driving. I found all I did was sit on the couch on weekends and on my days off. Then I got worse. I couldn't drive well and I stumbled. I was ahome visiting teacher for infants. I am on disabliity retirement and am on disablility. That happened after I was in intensive care and hospital for about 7 weeks.I was in bed for months too.
Sorry I wish I had better news.
It will be almost a year now since I was hospitalized. I miss my job now. I am getting more normal daily.
Ann

deleted_user 02/13/2012

I don't know what advice to give, Cassy. My symptoms are now well under control and have been for the past four years. The first three were a rollercoaster, however, and sometimes, looking back, I don't know how I made it.

My short answer to the work question: if you have bulbar and generalized MG, as I did, and you have either a labor-intensive or speaking job (like teaching), work may not be possible until you get your symptoms under control. OTOH, if you have a desk job, as I do, it's very doable, as long as you pace yourself a bit.

My symptoms were as bad as MG can throw at anyone. I have a 40 mile (one way) commute to work. My job has always been demanding. My will has always been like iron. For that reason, except when I was in a coma or in the hospital for multiple surgeries, I never missed a day from MG. I just dealt with it. None of my coworkers could believe I would come into work. I had lost 50 pounds because I couldn't eat. They couldn't believe when I'd show up at my desk 96 hours off the operating table for colon resections, either. I just refuse to let a stinkin' disease get the best of me, period. I believe it's mind over matter. It's the way I was raised.

If you can't work, consider it temporary.

Curt

mermaid3 02/13/2012

This is a tough one one esp if financially you need to work. We need the money so i work but only 20 hrs aweek. Maybe you can cut your hours. also since you have been sick it takes us MGers longer to recover maybe you just need another week to recover from the virus. and will feel differently about the whole work issue. listen to your body and get enough rest and fluids so you dont have a crisis. I am a nanny and can sit and rest as needed (very supportive family too). so if you cant cut hrs. how realistic is it for u to switch to diff. job.? Would your job let you take a few weeks off (medical leave) to see how u do when not working? just some random thoughts....

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