I have been off work since may. I tried to go back in October but only lasted two days due to neck fatigue and vision problems. Recently filed for ssa disability

I have had to work no matter how bad I felt. The cube farm is remarkably warm in the early morning, leaving me with crossed eyes and a weak core. I do not have recommendations but will watch this thread. Thanks for starting it, and hugs!

I'm working from home, but part-time. I have my own clients so I can do that. Hoping ivig will work so I can be more active. Right now, trying not to meet in person because of fatigue,slurred speech,etc. have you talked to your dr? You might need your Mestinon tweaked,or you might need to give yourself some time to adjust. Hang in there!

Elinora, someone mentioned that WalGreens has a cooling patch. I saw them. $20. Also, there are personal cooling devices that you wear on your neck. I found them for$40 online. Drinking ice water helps me. Please be careful and don't push yourself too far....that's what I did for the last two years before I found out that I had MG.

Baboolilly, yes, we tweaked my Mestinon and I had a great three days of Thanksgiving. Now I am feeling side effects of Imuran and just plain weakness and fatigue.

Thanks for the comments.

I'm sorry about the weakness and fatigue.. When I have a glimpse of strength, it reminds mr that its possible :)

I had to let both of my jobs go and seek otherwork which is not so physical. So that is where I'm at. I'm looking for something at a desk. I'd been at my one job for 24 years and feel so out of the loop when it comes to looking. That it's self has been a job. Been so tired and exhausted doing all these job workshops. I just keep praying I'll find something and settle into it. I just can't even think "what if it's too much". I wish you luck and feel better. :)

I also have been out of work since June and have filed for ss disability I have written documentation that even with treatment I have gotten worse so we will see if I'm able to get it.

Fortunately, I was able to use the Family Medical Leave Act and I had the vacation etc time to post for my absences to get paid. I use a lot of it though. I was off for a month when I was at my worst. I had no choice but to have IVIG done and for some time before the IVIG, I was struggling because I did not get treatment. I learned the hard way.

Anyway, people were very understanding at work, even though they didn't understand what I was going through. I think knowing me before MG happened made a difference. I struggled at work for a couple months, getting help from people at work whenever I felt the need and I got a temporary handicap placard so I could park close to where I worked. I never did go to the DMV to get a handicap placard, but I could have. I don't like to sit down a lot at work, but I can and now I don't have to anymore once again.

Thanks, barbel. That's a great idea!

I know how frustrating all of this can be. I'm blessed having the support I have, but struggling because I've been definitely forced to an early Retirenment. It took me around two years for the entire desicion to be final. As a family we started to make changes facing the future. I was able to do it because at work I had a great support. They were able to see that the demands of my job were taking a final toll on my health.
Now, I'm just trying to start over, having my career and always in a management area for so many years shaped my personality and having to change is not an easy fix.
To make my story short, I also filed for disability and still trying to accept the profound effects that a decision like this can have on a still relatively young woman like I think I am.
Marcela

I know how frustrating all of this can be. I'm blessed having the support I have, but struggling because I've been definitely forced to an early Retirenment. It took me around two years for the entire desicion to be final. As a family we started to make changes facing the future. I was able to do it because at work I had a great support. They were able to see that the demands of my job were taking a final toll on my health.
Now, I'm just trying to start over, having my career and always in a management area for so many years shaped my personality and having to change is not an easy fix.
To make my story short, I also filed for disability and still trying to accept the profound effects that a decision like this can have on a still relatively young woman like I think I am.
Marcela

I know how frustrating all of this can be. I'm blessed having the support I have, but struggling because I've been definitely forced to an early Retirenment. It took me around two years for the entire desicion to be final. As a family we started to make changes facing the future. I was able to do it because at work I had a great support. They were able to see that the demands of my job were taking a final toll on my health.
Now, I'm just trying to start over, having my career and always in a management area for so many years shaped my personality and having to change is not an easy fix.
To make my story short, I also filed for disability and still trying to accept the profound effects that a decision like this can have on a still relatively young woman like I think I am.
Marcela

I know how frustrating all of this can be. I'm blessed having the support I have, but struggling because I've been definitely forced to an early Retirenment. It took me around two years for the entire desicion to be final. As a family we started to make changes facing the future. I was able to do it because at work I had a great support. They were able to see that the demands of my job were taking a final toll on my health.
Now, I'm just trying to start over, having my career and always in a management area for so many years shaped my personality and having to change is not an easy fix.
To make my story short, I also filed for disability and still trying to accept the profound effects that a decision like this can have on a still relatively young woman like I think I am.
Marcela

I know how frustrating all of this can be. I'm blessed having the support I have, but struggling because I've been definitely forced to an early Retirenment. It took me around two years for the entire desicion to be final. As a family we started to make changes facing the future. I was able to do it because at work I had a great support. They were able to see that the demands of my job were taking a final toll on my health.
Now, I'm just trying to start over, having my career and always in a management area for so many years shaped my personality and having to change is not an easy fix.
To make my story short, I also filed for disability and still trying to accept the profound effects that a decision like this can have on a still relatively young woman like I think I am.
Marcela

I should not have been at work for two years. I ended up working part time for many years because I had no diagnosis and started to believe I was just weak willed. By about 11 in the morning I would have lost almost 90% of the days energy and had plenty of myasthenic episodes at work. I still remember accompanying a short childrens song on guitar and not have enough energy left in the arms or fingers to even get to the end of the song. I would also have to lay on the floor of my office before going to the coffee machine because my trunk muscles would not get me all the way there in one piece without folding over on the way. Carrying the coffee all the way back to my office was a different story. I would lock my office door and lay down on the floor in between classes and that would temporarily energize the muscles to get me through.

Oddly enough Im almost doing an 80% position now and this is the first time in 4 years that my muscles are able to handle the exertion required by my current workload. It is not anything I did more that I have fortunately encountered a very slow progressive remission (with one exception) and I only congratulate my own survival instinct doing the adapting job and managing to get through all of this.

Calmday