Tuesday, May 5, 2009

Tuesday at the Mayo

We got bored waiting...








Here is a note Dr. Engel has on his desk. Actually he had 2 notes like this. It says "Leave this desk as neatly as you found it" A.G. Engel...He is very organized... So funny..




Dr. Engel is a cutie....
Today started with an EMG that lasted two hours. It is a test where they shock different muscles in your body to see if the muscle gets weaker as it is exercised and shocked. Then they stick a needle into several muscles and listen to the muscle waves. I really don't understand it all, but it is the 3rd one I have had done and Dr. Engel said it does show decline in muscle function as expected with CMS.

Then we met Dr. Engel again this afternoon. He gave me a prescription for Albuterol pills which is a treatment for CMS. He has now given me the diagnosis of CMS instead of MG. He will not know what type of CMS it is until he is done with the genetic testing (there are several types). He said he will check on me in 3-4 weeks to see if the medicine helps.

Dr. Engel gave me three of his research publications that I had asked for. I really wanted to read his research. He said that he has seen 450 CMS patients since the 1970s. This is such a rare disease. I guess now he can say he has seen 451 patients with my new diagnosis. He is the world expert in CMS and he said he just saw his first MG patient and then liked it so he decided to continue research.

I see him tomorrow again at 11 o'clock to see how the medicine has worked and then I will be free to go. It is crazy that it has taken 22 years to get a clear diagnosis of what has been going on in my life. Dr. Engel is a funny, nice, smart man and I'm so glad he decided to do this research and investigate.

3 comments:

Lisa Lehrmann said...

Thank God after all this time you finally know what you have. Praying now for a quick treatment and recovery. We love you so much and miss all of you. Can't wait to see you.

Anonymous said...

Your doctor just looks like a grandfather. I can tell you bonded with him very well. I am so glad that you went to the Mayo Clinic. It is so much easier to accept an illness when you actually know what it is and have all the information about it.I know yall can't wait to get home to Miss Haley! Have a safe trip. Love you all. Susan

Winter Wonderland said...

I'm so glad they finally know exactly what it wrong. I pray the medicine works for you.