Can you work full-time with MG?
 

Hi - I'm new and so happy to finally have found this website. Just reading the posts this past weekend has been so encouraging and affirming. Those of you struggling to get diagnosed, please hang in there and know that many of us went through the same struggles, including myself.

I am in my early 50's and was diagnosed with MG in 2005. Currently, I take 60mg Mestinon 3-4xday, plus 180mg sustained release at night, CellCept 2xday and IVIG once every 2 weeks. I have been working full-time since 2003 as the director of development and PR for a children's museum. I have worked hard to keep going with my job but finally crashed the first of April (breathing, walking, no voice, etc). I'm out on short term disability and resting, etc but can't seem to get my strength back.

After 2 months of trying to recover, I can be out for 2 or 3 hours, then I go down again and can barely talk, walk, etc. I can't seem to get any stronger than this. Right now, I am supposed to go back to work part-time mid-July and full-time mid-September.

My question is - am I expecting too much? Can a majority of people with MG work demanding full-time jobs? A minority? It has always been a struggle to keep going with my work even when I was at my strongest with MG, but I wonder if I have not been realistic with my expectations of how life should be managed with MG. I also have a wonderful husband, 4 grown children and 2 grandchildren that need my time and attention, too.

Thanks for any insight you can share about working and managing MG.

Hi, Shar. Welcome.

Unfortunately, it's different for everyone. I know a woman who can work but she is maxed out on drugs most of the time. I can't work, mainly because I can't do a lot of the MG drugs and have to use only Mestinon and rest to get better.

It's a tough choice of whether or not to be run down all the time and work or to try to go on social security disability. You can do very part time work while on soc. sec. but not much. I wish I could still work because not doing so has been quite depressing (it's been over 10 years for me).

You should probably discuss this with your neurologist. They can be very "objective" when it comes to things like this.

You have a lot on your plate and it's up to you to determine what you can handle or not. You can try to simplify your life, like using paper plates and avoiding doing dishes, etc. This disease is so stupid because you can be okay one day and crap the next, even if you take it easy.

I hope you can work it all out. It's really hard, isn't it?

Annie

Thanks, Annie, for your reply. It is hard to figure out what to do. My neurologist doesn't say very much except that we will just have to take it one day at a time and see what happens. My nurses at the Infusion Center, on the other hand, are pretty vocal. They told me I should start thinking about long term disability. I am fortunate in that I have excellent disability insurance.

I really enjoy my job, but it's about all I can do (the job). I have someone to clean my house, I'm not cooking anymore (except on Saturday sometimes), and I pretty much am in the recliner and then bed as soon as I get home from work. That's when I'm doing well. Now, I'm not working and still can't do anything else.

When I put it in writing, it looks pretty obvious. But, I guess I keep wondering how to get stronger, can I get stronger and stay stronger, how long will it take? I thought I would be back "up to normal speed" by now and am not.

This is a good warning, though, for others not to ignore MG and always try to "push through" and act like nothing is different. It WILL catch up with you eventually. Give yourself the credibility and respect to do what your body needs in order to function.

Hi Shar!
 

Hello and welcome to the best support site in cyberspace! I was unable to work until I went into remission and then I only worked part-time because I was afraid of coming out of remission. Sadly this past year I did come out of remission after 17 years and I can't even work part-time {I am 45}. Heck half the time I am lucky if I get to go to the store and out to my sisters in the same day. Your children and grandchildren are more important anyway so if you can afford to stop work then I would and put what energy you do have into those grandbabies :) :grouphug:

glad you found this site! i was diagns. in feb and working through mestinon ,may change to imuran. i have been 100% diabled since 2001 from something else that will never go away. i wonder if you have a good reaction to mestinon-do you feel worse when it wears off? if you were just trudging along without meds would you not feel worse since you never felt better>>> how do you know if it's mg or mestinon reaction or fatigue or just "lazy"[i mean not used to doing the things you can do on meds] that is one of my things to figure out but how??????:Dunno:

Welcome Shar!
 

I've not been on much lately because I have JUST gone back to work and gotten back up to full time. I was dx'd in 2004, had the thymectomy and drugs- went into remission, but was pulled back out by what appears to be a virus in the central nervous system.

I love my job, too, and with grown children who are out of the house I think I'd go nuts if I were to stay home when feeling well. I am fortunate in that my bosses (and owners of the company) are very understanding and willing to work with me. I ALWAYS take my hour (longer if needed) for lunch to eat quickly, then just rest - no talking on the phone, etc. I just sit in my car and listen to music. I leave if I start to feel too tired.

One thing that makes it more difficult for me is that my husband owns a small company that I do the accounting for (my daughter was helping me with that, but she has moved to Minnesota so it's all me now :confused:). I am a little tenative about how I will be able to handle doing both.

It is definetly a matter of choice - as you say, keep the job and rest when not there so you can make it back the next day, or give the job up. When I am starting to have difficulty, I find I feel less like making that sacrifice, but when I'm doing better I can't imagine not going to my job. I still need to learn, even after all this time, a better way to balance it all!

As you said, DON'T try to push through when the tiredness starts. That's very difficult when you are a key person with deadlines. I do all the accounting and HR work for my company and I definetly have problems in the Fall (getting ready for insurances/benefit renewals) and Spring (taxes).

It's a personal choice, and with having the disability insurance, you would be in a good position to retire. I work at my job more for the sense of satisfaction and contribution than the money though. If I go back into the "dumps" again, I may have to rethink my position.

Best of Luck to you! Glad you found the site. The people are awesome and I miss them all, since I don't seem to get on much anymore!

Hi Shars,

Welcome to Neurotalk.

I went through short term / long term disability and am just now getting back to work. My return to work has been a 4 week 4 hour per day, going onto 4 weeks of 6 hour days now and then I'll be onto 8's. I was out for a full year before starting this and for a month before returning at all I was doing physio to rebuild stamina.

If you are still having great difficulty with weakness after only 2-3 hours out, you should talk to your doctor. It could very well be too early for you to return to work. Take advantage of your healthplan; pace yourself and look after yourself... it is much better to put off return to work for a little while than to land in hospital.

I hope all works out for you.

Cheers,

Brian.

Thanks so much for the replies. It helps to know that just because I haven't bounced back yet, it doesn't mean I never will. I need more patience. I do plan on talking to my doctor again this week - he's great.

The Mestinon helps me significantly. I take it 60mg every 2 to 3 hours. I don't have to look at a clock to know when to take it. It starts wearing off after the second hour. I think it is what is keeping me out of the hospital. The IVIG has always helped me tremendously, but not as much when I get this far down. I had a round of 5 days at the first of April and may need to do that again, instead of the once every two weeks routine.

I didn't know with long-term disability that you could be on that for a while and then build back up to working. That is encouraging. I have a wonderful boss, too. He is very supportive. I don't really have to work for financial reasons although it helps, but being in a children's museum all day sure helps me keep a positive outlook.

Hi Shar,
welocome!!

I was diagnosed in late 2002, and worked part time for a few years, but suffered. I would come home totally exhausted, and do things that needed doing, and usually have something simple for dinner, like a glass of milk, and crash into bed, I decided this was no way to live. I was forced to quit work when it closed down.

Now I'm on a disability pension, I've tried to go out and do some volunteer work, but its the driving home that always does me in. I would love to work, but at the moment my body just cant manage looking after me and working at the same time.
Kate

I also had to go on short-term sick leave May 1st due to bad MG....For the year prior to going on sick leave, I was very ill and getting worse and worse...i really pushed my body to the limits...i wont be doing that again...Would prefer to have an income cut in half rather than make my body suffer....My job was also really stressful as well, so that didn't help matters...

I'm hoping that in time, I will get better and maybe be able to go back to school and pursue something that I can maybe do at home...Graphic design or something....

Hang in there....Hopefully, you will be feeling better soon! :)

Hi Sharman,

Welcome to the forum. It is a difficult decision to make. Just always listen to your body...it's never wrong.;) Take care and I wish you luck in whatever you decide to do. Keep us posted.

Hugs,
Pat

Hi Everyone:

Thanks, again, for all your feedback. It is helping me process everything. It is amazing to me reading all the posts in this forum how much everything sounds like me. I have a tendency to think everything is "just me." It has really opened up my eyes that I am not strange and "different."

I pushed way too hard for the past year, too. It ended up with me falling and breaking my foot the first week in December, which contributed to my spiral downward, I am sure - especially since I kept on working with, what felt like, a 100 pound boot on my foot!

When I tell my staff and friends that I am not sure what the future holds and if I will be able to go back full-time, they all say, "That doesn't sound like you. You're always so optimistic." But, they don't get it. It's not that I am not being optimistic, it's just that I am finally trying to be realistic, listen to my body and be smart for once.

I am feeling a little stronger this morning - last week was rough.

Thanks for all your support.

I teach high school full time. I took off 5 - 6 weeks after my thymectomy, it was right at the beginning of the school year. Throughout the year I took off about 3 days. I had the flu once and just needed a couple of days to rest. I take a short nap 2 - 3 times a week when I get home. I'm usually up late checking papers, so I only get about 6 - 7 hours of sleep a night. On the weekends I shoot for 8 - 10 hours. Now, I'm off for a couple of months on summer vacation and plan to take it easy.

Hi Sharman,
I work full-time! I was diagnosed nearly 5 years ago with mild MG but was "upgraded" to moderate about 18 months ago. I take A LOT of meds to keep myself going but I manage. Last year I was working full-time as an elementary teacher but now I'm in high school learning support. I also volunteer as a Girl Guide leader one night a week. I've never missed work other than 4 days last year after I had IVIG and was super weak. At my worst I couldn't walk up the stairs my school and had to get a friend to bring me tea at lunchtime, but my MG didn't really impact my teaching.

I hope you find a good balance and figure out your limitations. I need a lot of sleep - I get about 9 hours weeknights and almost 12 on weekends. In fact, tonight I think I'll take a bubble bath and hit the sack early - we had guests for the past week and I'm really tired!

Good luck with everything!
~Kathy

When I was first diagnosed, I cut my work hours down quite a bit. I had been a preschool teacher & worked 12 hours a day, 5 days per week.

When symptoms came in to play, I cut my hours to 7 hours per day, 3 days per week. I had a great run with those hours, even after I improved.

When I became a mom, I gave up the paying job to be a stay at home mom.

Now, 10 years after diagnosis, my symptoms are really gearing up. I'm at the point where I need help keeping my house going & my children tended to.

As far as you keeping your job, I'd advice to pick & choose what's most important to you. If working at the museum is feasible & good for your mental well being; continue for as long as you can. Fewer hours may not be a bad idea. If you can afford to have help with household chores, I'd invest in that also.

Jenna

Hi,

I think you can see from the posts here it depends on the individual. Here in the UK you have to be practically at deaths door before you can get plasma exchange or IVG sorry if I have spelt it wrong.

I have worked since I was 16. I worked when I was at university getting my degree. I haven't worked for the last year and have been medically retired.

I basically had to retire due to a total lack of support from my work place. I continually asked to be moved depts etc but they just couldn't or wouldn't accept that I was ill. I was living to work. I would work 9 hours on my feet all day in charge of 130 people and then I would collapse into bed and sleep for 12 hours get up and do it all again. I couldn't do house work or shopping or stay up past 7pm.

I was so tired I couldn't visit my family who live an hour away. My relationship with my husband started to come under pressure as we never saw each other. We would be in the same house but I was alseep! I realise now that I don't work how easy it would have been for us to just drift apart. I dont think it would have happened but it could of. Now that I dont work I make sure I rest before his day off so that we can do something together, even if its just sitting in the garden.

Even whilst working I was suffering double vision, blurred vision, generalised weakness etc etc. The stress eventually got to me and I ended up being hospitalised.

I look back now and wonder how the hell I did it? Now I dont work Im awake longer and can do more around my home. I would love to work but I dont know from one day to the next how Im going to be. Its the social interaction I miss the most- not the stress!

Good luck

Rach

Hi Rach
 

I can relate to what you're saying about the effort it took to you to work and not being able to do anything but work. The only difference for me is that I have a wonderful boss and supportive co-workers. But....I'm not sure if that's enough. My "bouncing back" from crashing the first of April is a lot slower than I thought it would be. I've learned a hard lesson about trying to work 50-60 hour work weeks. MG won't let you ignore it. It will catch up with you. I had planned to go back to work part-time mid-July but my doctor told me Friday that's not going to happen (not that I needed him to tell me, I already knew).

My faith is strong, though, and that helps me very much. Plus, I'm fortunate to have a supportive husband and 4 great children (now grown). It will all work out one way or another. I do get a little teary about it all, though. :)

I work full-time but it's so hard, most of the days i have double vision, and i have slurred speech. I do it, but it isn't easy, but i have to pay the bills!! My body sometime is telling me no, but my bills/rent is telling me yes.

Hey Shar!
 

Hi Tracy!
 

Hi TRacy! Is there any way you can get disability? I'm going to try and get on it as well, but am worried b/c my family needs my job for insurance purposes.......don't know how its going to turn out, but I just can't work full time now!

How are you today?

Big hugs!
ERin:D