When I was in the hospital trying to get a diagnosis, my mom kept a journal for me. Yes, I do know I have the best mom ever. I found it on the shelf yesterday and was reading through it again. Thought I'd share an entry or two. My words are in [brackets].
October 18, 2000 [the day after I arrived by helicopter to University Hospital in Ann Arbor]
Mom and Dad came in early this morning. I am extremely unhappy with this tube down my throat. It is most annoying. I'm asking when this tube is coming out. They try explaining that I need it for breathing. This disorder [all they knew at this point was that it was neurological] I have has made my muscles weak and has done some nerve damage. They think it's called "myasthenia gravis." This can be treated with a treatment called "blood plasma exchange" [plasmapheresis]. Also cortisone is given and possibly other drugs as long-term treatment. [There is no cure].
All I know is I'm laying here with no underwear on, tubes everywhere and I can't communicate. I try by writing on paper with a marker. I haven't lost my sense of humor though. I wrote, "Do I look fabulous or what?" It made mom and dad laugh.
October 19, 2000
This morning Dr. Smith talked with mom and dad. Now he says they aren't sure if it's myasthenia gravis because although I have many of the symptoms there is a couple that usually begin like drooping eyelids that I don't have.
I need another EMG to find out. I didn't really care to hear that either. This is a nerve test and ends up with me being poked with needles [not to mention shocked!]. I still want this tube out "now!" My humor shines through once again when I write "Am I still alive?" [I'm not sure I was actually kidding at the time!]
Later today the doctors say they think I may have something called "Chronic Inflammatory Demyelinating Polyneuropathy" or CIDP [not to be confused with lung disease called COPD].
The treatment for this one is the same as the MG so they say they're beginning treatment. I'll have one today, one tomorrow, and 3 next week. Also had another spinal tap today. More poking. They're sending my spinal fluid to Boston and Maryland for testing.