Hi I have an appointment for Monday for a functional capacity evaluation. I have myasthenia gravis its not like that one appointment is going to show my problems completely. Anyone else have one of these appointments? If so what can I expect?
Thanks...

Hi Huntress,

I'd recommend taking someone with you who can help to remind you to make the points that you need to make.

You need to let the doctor know if the day of the exam is a good day, bad day, or about avergae for you.

It's up to you to let the doctor know how your dx affects your daily living and WHY you can't work.

If he does a physical exam and you are performing certain tasks, you need to let him know what adds to your pain and your fatigue. If just the process of getting there......having to get up, showered, dressed, etc will mean that you have to rest for x hours or days after this appointment, you have to tell him that.

Don't say that you can't do something that you can technically do.......say that if you did x,y,or z.....your symptoms would be a,b,and c and you would have to do 1,2,and 3 to deal with it.

For example.....I am uncomfortable standing for more than a few minutes. Most days, I can't stand for more than 5 minutes. Today I could, so I got to go to church. Most weekends, I have to skip church or stay sitting when I should be standing or kneeling. A few weeks ago, I went to a concert and ended up standing for over 2 hours. I also had to take double my regular amount of narcotics during that period and over the next 24 hours. I needed a lot of ice packs and had to spend most of the next few days in bed. It was Ringo Starr, so it was soooooo worth it, but I couldn't do that every day.

In an exam, I wouldn't say that I CAN'T stand for more than 5 minutes. I would be careful to say that USUALLY that is my limit before the pain starts getting too bad, but occassionally I can stand for longer.

Explain each answer as much as you need to so the doctor has a better understanding of what he can't see.

Check out the stickied thread http://neurotalk.psychcentral.com/thread120255.html

hi, everyone. I wrote a long while ago for the funtional capacity eval well that test was okay. I had to have someone with me, and they had to tell the guy that I saw how I am daily. Its really hard for me to speak, I mean somedays which are not many at all I can talk but only for a little while then my voice is gone again. but they had me do that screw the bolts thing, i could not do it long at all. had to hold my hand in the air and screw the bolts in...got really weak and could not finish it. also they had me bend down and stand up, now he only made me do it once. never could do it repetitive nor on days that I am so weak.
The next day I had a pysc exam. that was just stupid, but that day my speech was not too too bad. I mean like you all know MG varies, and in my case most days I cannot speak without it sounding like gibberish, chipmunks that one can barely understand. Still waiting months later for the determination for SSDI and so running out of money because I cant work.
its scary and stressful. Anyone else having problems with money and getting help for this disease?

Hello again Huntress !

If you want to talk to someone specifically about getting help with MG, you might do better posting to the specific board for that condition. http://neurotalk.psychcentral.com/forum77.html

There are some issues specific to that condition best met by the MG forum, but there are so many more issues that go beyond our specific conditions, like the frustrations of dealing with any disability, waiting for ssdi approval, trying to stay afloat financially, etc.........many of us have those issues in common, despite having different diagnoses.

Are you single ? What is your current living situation ?

Waiting for ssdi approval is mentally exhausting. For many of us, the appointments and stress add to the difficulties we have with our disabilities. The long waits for approval can lead to financial devastation.

I was "lucky" in that I was on WC during my wait time (although at a decreased rate) and my family also had my husband's income. Because that was still such a drop from our 'pre disability' family income, we did use up our savings. My biggest impact from that is moving forward. I want/need to get a divorce and I don't know how I'm going to make it on just my ssdi income, now that we've burned through our savings.