Prednisone 40mg and Mayo Clinic

Well I haven't updated in awhile, so I thought I would do so while little Haley is taking a nap. I have now been on prednisone for a month and am not seeing any results. I am actually feeling a little weaker in my legs. I go back to the doctor next Thursday and will see what she is going to recommend. I am still doing IVIG treatments every 3 weeks, and that is just more of a booster maintanence thing than anything. I don't feel any real effects from it, but thats normal with MG.

So, I have made me an appointment at the Mayo Clinic in May in Rochester Minnesota. They see 350 MG patients a year. They say prepare to stay a week and meet with some of the best neuromuscular specialists. I am looking at plane tickets and starting to plan. My goal is to go back to work in August, and time is not on my side. I don't want to look up and it be August and I'm still sitting here feeling bad. Not to say that going there will be a miracle, but its a shot and I'll do anything at this point.

I have learned to manage and adapt pretty well. This disease messes with your mind because there is truely nothing you can do to fix it, and no explanation as to why you can do something one time and not the next. It really puts life into perspective when you wake up and think, "I should be happy, I can swallow and breath." Thats pretty much what I say each morning.

Here are just somethings we take for granted that I have trouble doing now. Hopefully soon I can read this and be doing them again:

1. Brush my teeth standing up straight
2. Put my shirt on or take it off standing up straight
3. Brush my hair with one hand
4. Put my hair up in a pony tail without laying on the bed or in a chair
5. Get a glass bowl out of a tall cabinet
6. Stand up out of a low chair
7. Sit on the floor and be able to get up
8. Lift my fork to my mouth without having to rest my elbow on the table
9. Walk and carry Haley or put her car seat in the car
10. Climb stairs

So if you think you are having a bad day, if you can do those things above, I'd say you are doing pretty good!!