Originally Posted by art chick

We went to an Art Festival last weekend. We walked the length of a football field and then some in the sun then stood for about 20 minutes to get food. Then we sat in the sun since there were no tables in the shade.
After eating, we walked through the art area. All in the sun. It was about 80 degrees but I have to tell you I am used to being in the house and the A/C. All of a sudden, I felt really strange and I knew something was very wrong.

Three more steps and my right knee starts giving out every two to three steps. I cannot walk at all. So, my husband goes to get help and two EMT's end up coming over to escort me all the way through the venue in a wheelchair. Not fun. But I did teach two more people about MG and they were happy to learn so that was pretty cool.

I am having a very bad week and I can see why a handicapped parking permit would be great right about now (congrats Abby!)...not that it would have helped me on that day but right now I feel so limited because I cannot even walk the length of a block without my legs giving out the rest of the day. My stamina and strength are shot. It's been months since I have been this limited. I think the stress of having my child diagnosed with MG has caught up with me.

I had the worst side effects ever on IVIG this week: leg paralysis and very low bp. Of course, no one had ever seen the paralysis before and they had to report an adverse drug event. My legs got heavier and heavier until they were absolutely dead. Has anyone had an experience like this? It took 6 hours each day to infuse. I am exhausted.

debra