[SharS]

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.

[AnnieB3]

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

[SharS]

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.

[erinhermes]

Hi Shar! Welcome to neurotalk! Whoever thought to make this site was BRILLIANT! I was like you, struggling to find a site where people "understood" what was going on daily and stumbled across this site - it has been a life saver! You ae going to meet so many caring, wonderful people who know EXACTLY what you are going through and always willing to lend a sympathetic ear - as well as much needed advice!

I am 35 and was dx'ed right before my 34th bday. Working full time has NOT been an option for me, as my MG is a bit aggressive. From where I sit, it does sound like you are in the same boat. I miss working, but am never going to ignore my body again - EVER!

If you are receiving IV IG every 2 weeks and are still crashing, you may want to ask about plasma exchange. It is more invasive than the IV IG but may provide you with more stamina.

I cannot speak for anyone else, but for ME working fulltime is not an option. I am lucky enough to work with my hubby, so I can get the majority of my work done here @ home on my good days - on my bad days I stay on the sofa........

Can't wait to hear from you!
Erin

Originally Posted by SharS

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.

[Joanmarie63]

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

[xmas 25]

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??????

[ras1256]

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 ). 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!

[Brennan068]

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.

Originally Posted by SharS

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.

[SharS]

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.

[redtail]

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