Continuing to work? how much? how's it possible?
 

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

Thanks!
 

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.

Thanks
 

This is super helpful—thank you!

I don't know how typical I am
 

I live in Arizona, too. Phoenix area. The hot months really drag me down, but I spend as much time as possible in the air conditioning.

My job can vary from active to sedentary. I really fell off when I started presenting symptoms: ptosis, difficulty with swallowing, weakness, then unsteady gait. My employer asked me to go onto the Disability program (union job with a big company) until I got diagnosis, about 5 weeks. After spending a week in the hospital getting plasmapharesis, I spent another two weeks gaining my strength and co-ordination back.

I had to have a meeting with management to get the OK to go back, and have been working full time plus necessary overtime since. I've done 50 to 60 hour weeks regularly. The weekends usually involve a lot of sleeping.

I'm not in very good physical shape, rather overweight, but I seem to do all right. I need to work as much as I can to make the bills, so I do what I have to.

Theres a support group in Tcson and Phoenix
 

Arizona Chapter of the Myasthenia Gravis Foundation

They're inactive until September, but there are phone numbers and e-mail addresses.

If you can make it to either Phoenix or Tucson meetings, there may be some help with pointing you toward resources.

I guess I'm one of the fortunate ones that can still work. I was diagnosed 3 or 4years ago right after Thanksgiving. I had severe ptosis of the right eye. It was brought on about a week after getting a flu shot and taking antibiotics for a cough and sinus infections that I had for 2 months so I figure one of them triggered my MG. I hit the mestinon hard for about 4 months before my ptosis gradually cleared up and I have been mostly in remission since. I have been mestinon free for about 2 years with the exception of when I start feeling off like last night when my breathing (Throat tightened up) made it hard for me to sleep after driving from Boise to Salt Lake and then back to Boise in 13 hours for work. I quit seeing the neuro after she said I was misdiagnosed. She got my labs from the previous neuro and she did did a 180 with my labs in hand. I quit seeing her but will need to go back if I need anymore refills of mestinon. I am always tired in the evening though and my muscles are always sore. I have heard that muscle weakness doesn't mean muscle soreness so i guess I can't put that one on MG.

I can't, and still struggling to accept that.