[Pinkyt177]

I've been reading feverishly and thought I'd quit lurking and say hello. I'm newly diagnosed mainly because of my pride. I didn't want my doctors whom I know well to know that I couldn't exercise because I had such weak muscles. It's not like I didn't try but I would have to stop after 25 feet and rest. then I thought I had heart failure when I couldn't catch my breath and I didn't want to tell them that either. So, finally, I went to my neuro after taking a 11 day Disney vacation and coming back with severe exhaustion, drooping eyelids, not able to hold my head and arms up and he said, hmmm I wonder if you have MG? So now, I know!

Here is my question do you all work, I'm trying to pursue some accomodations to keep working mainly I want to work from home every other day but, I don't know what's going to happen. I have yet to work a full 5 day work week since the first of December.

Thanks for all of your wonderful posts and advice.

Pinky

[pingpongman]

Hi Pinky
Welcome to the board. I can't help you with the work thing since I'm retired. Glad you finally told your doctor something was wrong. If I could only get my sister to do that. We have some wonderful people on this board and they give everyone great support in their struggle with this disease. I can relate my experences thus far but my wonderful wife knows way more about my disease than I do.
Again Welcome,
Mike

Originally Posted by Pinkyt177

I've been reading feverishly and thought I'd quit lurking and say hello. I'm newly diagnosed mainly because of my pride. I didn't want my doctors whom I know well to know that I couldn't exercise because I had such weak muscles. It's not like I didn't try but I would have to stop after 25 feet and rest. then I thought I had heart failure when I couldn't catch my breath and I didn't want to tell them that either. So, finally, I went to my neuro after taking a 11 day Disney vacation and coming back with severe exhaustion, drooping eyelids, not able to hold my head and arms up and he said, hmmm I wonder if you have MG? So now, I know!

Here is my question do you all work, I'm trying to pursue some accomodations to keep working mainly I want to work from home every other day but, I don't know what's going to happen. I have yet to work a full 5 day work week since the first of December.

Thanks for all of your wonderful posts and advice.

Pinky

[Stellatum]

Hi, Pinky. I only work part-time from home anyway, and I'm easily able to do that--in fact, since I work from my computer, it's the most restful thing I do. If I had to work full-time, I'm not sure what would happen. If I had a job like waitressing or something, it would be impossible. If I had an office job where I could sit all day...I'm not sure. I think it might depend on how stressful the job was. Once a week, I teach a philosophy class to a small group of homeschoolers at our co-op. It's very informal. It's at my friend's house, and we're a relaxed, friendly group. I have five intelligent, well behaved, respectful students. Nevertheless, at the end of the class--it's an hour and a half long--I am totally shot. I can barely walk. It's not that I'm "stressed" in the sense of nervous or anxious; I think it's just that it requires a ton of mental energy. It takes me two days to recover.

But, myasthenia differs greatly from person to person (and sometimes from day to day or month to month!). I know a woman who's had it for 20 years. She says, "Oh, yes, if I overdo it, I do get tired." It's people like that who don't post on boards like this--simply because it's not a big issue in her life. So if the people you meet here all seem to be terribly sick, don't feel like you're doomed! We're not necessarily an accurate representation of the typical myasthenic (as if there were such a thing...).

Anyway, congratulations on being diagnosed. That's huge. Onward and upward.

Abby

[Juanitad]

Hi Pinky - You didn't say what type of work you do. I worked for 10+ years after my diagnosis, but I did office work. I finally had to quit last November because I wasn't able to handle the stress and workload any longer.

What treatments are you receiving for your mg? Have they helped?

It's different for all of us, but good luck with your journey!

[Shari_W]

Hi Pinky and welcome to our Family,
I ,too, worked for over 10 years after my MG diagnosis but finally decided that it was time to file for SSDI five years ago. It was best for me to do so because I couldn't go on pushing myself the way I was.

As Juanitad said, MG is different for everyone so you very well may be able to continue working for a long time. I do want to say that once you accept MG then you can begin to move forward. I'm so glad that you are no longer fighting it but learning how to live with it.

Loving Hugs,
Shari

[nevadabound]

Originally Posted by Shari_W

Hi Pinky and welcome to our Family,
I ,too, worked for over 10 years after my MG diagnosis but finally decided that it was time to file for SSDI five years ago. It was best for me to do so because I couldn't go on pushing myself the way I was.

As Juanitad said, MG is different for everyone so you very well may be able to continue working for a long time. I do want to say that once you accept MG then you can begin to move forward. I'm so glad that you are no longer fighting it but learning how to live with it.

Loving Hugs,
Shari

I agree with shari thats what was happening to me 20 yrs ago decided i could not go on pushing myself in trying to go to work i was a courieerr and could not walk up stairs or even a sidewalk then they put me in the office doing office work and at that time mg was tackling my body it was even hard just to sit there in a office so my husband told me to quit work and then i filed for ssdi and got it..

[Pinkyt177]

Hello all the day I posted this note was a very, very, very bad day. I commute to work 57 miles from home every day, then I work 9 hours with an hour for lunch. Anyway on that day in the middle of the day I had to drive 50 miles in the opposite direction to a class. When I finished the class at 5pm I had a horrible reaction. I got in the car and I couldn't move, I did make it home using cruise control and one hand at a time to steer. It was really bad, I had to pull over every 15 miles and rest. partly because I was crying. I got home and sat in a chair, then I had to lay down, but my neighbor had to come over to help my hubby get me into bed.

I think its pretty clear that work is not working for me so to speak. I was off for a week and a day then i went in for a half day yesterday. I'm off today again and will be off until Tuesday, my sister passed away so I have bereavement leave.

I did resume taking my Mestinon. I also started B-12 and Vitamin D.