I would love to know how others are managing work. Do you find you are able to work full time? part time? not at all? My health situation overall is very complex, with many clear reasons for severe fatigue, not just MG. I’ve found that, since my thymectomy and diagnosis with MG, attempts to come back to work full-time have failed, exacerbating my symptoms. Working more than half time is now impossible for me.

As far as I can see, I am facing only bad choices. As I’ve written in previous posts, I’m applying for Long-term Disability benefits. However, if I work any less than half-time, my employer would bill me for their part of my benefits as well as mine. My plan, as it evolved over the last two months, has been to work half-time and hope to get the LTD payments that would fill the gap between half-time and full-time pay. But, given how much my symptoms have worsened just this week, I’m now worried I might not be able to work even half-time.

So I am anxious to hear how others are doing with working.

2Fatigued, I don't know how it is for others, either. I can tell you that I am not able to work. I was already on Social Security Disability when I started having trouble with generalized weakness. If I were not already on SSDI, we would have had to apply for it.

My thoughts go out to you. It's hard to be in this position, and to consider going on disability and everything that goes with it. But when you need to do it, you do...so I'm sending lots of good wishes your way!

Take care,
Erin

Erin, thank you very much for your sharing and your kind thoughts.

The only way that working might be possible is with a treatment that manages the MG well. There are people who do work.

I personally haven't been able to work full-time since 1998. But that's me. I am not on anything but Mestinon.

Not working sucks in many ways, not only the paycheck part. I miss the interaction with my peers, the satisfaction of a job well done, doing what I love, and so much more about it all.

Only you can decide what works for you, as far as treatments and lifestyle decisions. Take some time! This is a lot to adjust to and work through. I'm sure you will come up with the best plan for you.

Annie

I've been back to work now since Feb 2016, I started progressively and now working Mon to Friday 8am to 3pm 30hrs/week, for me that alone is therapy on its own, just the fact of being with people and freinds helps me forget about a lot of things...I stayed home for 10 months and thaught I was going to go CRAZY! to much time to think...

I'm on a heavy dose of Mestinon every 3hrs and Imuran once a day, Mestinon Timespan at bedtime and IVIg every 3 weeks, it keeps me a float so far.

I don't do any or very little physical work it's all mental, computer, email and lots of phone calls which does get to me if I over do things "talking" I'm having a lot of bulbur symptoms which really affects my speech, my swallowing is good but all my fascial muscles, mouth, cheeks, tung and lips get numb... I take time outs and I get back on track but as my day goes on after lunch things can get really bad so when 3 pm comes I'm ready to go home and have some downtime, sometimes i take a nap for an hour or so. I feel that 6hrs is plenty for my condition, it took me a long time to be able to get to this point and hopefully hang on, I listen to.my body I'd like to be able to do more I use to work 60hrs a week, I'm enjoying what I'm doing and my boss is ok with it so far.

All I can say is that I encourage all you MG'ers to keep busy at doing something you like at your pace it really helps to.make you forget about things and gives you a sense of acceptance or contributing to something constructive by day's end...it's really helped me emotionally.

This is super helpful—thank you!