Sunday, June 30, 2013

A New Journey

(Please remember this was first published on 6-6-09.)  

4th of July on the trails 2009 018Because the purpose of this blog is to record the events of my life, I must tell you of a new journey , one that neither my husband or I wanted to take. Today I am consumed with the possibility of Stan being diagnosed with Myasthenia Gravis. I am in a waiting room at UAB as I write this. We knew something was wrong. For several months I have watched him get weaker, just not being able to do small tasks, and requiring rest after each effort.
We have a wonderful Primary Care Physician who really listens and after describing our plight, he ordered special blood work which came back “positive” for MG. The second round of tests came back “negative”. Next came a referral to a local neurologist with many more tests. Some came back convincingly “positive” and some “inconclusive ". His opinion was that we see the “expert” on Myasthenia Gravis at UAB, Dr. Shin Oh. We were really hoping not to have to get on this merry-go-round. In the interim, he agreed to put him on the drug, Mestinon. This drug is only effective for people with MG. So, if in fact it helps, this would be another diagnostic tool for Dr. Oh. It has helped! He takes it three times daily and approximately 45 minutes after he takes it, he is stronger. Right before another dose is due, he is growing weaker again….very short-lived but effective.
Our local neurologist faxed all his records to Dr. Oh. I talked with his nurse and she said to expect a call sometime in AUGUST! Dear God in heaven!!! This was last week and today, one week later, we are at UAB! “It’s a God thing”, my sweet daughter-in-law said. I believe it.
I had heard of this disease. I remember Aristotle Onassis had it. I learned to pronounce it….and I started my search, gathering information from every web site, forum, and chat room, learning much more than I ever wanted to know. To me, knowledge, even if it isn’t good, is comforting. I hate all the unknowns.
Stan will be going through yet another another series of tests today. That sweet man! EMG and nerve conduction studies will be done. Afterwards, we will talk with Dr. Oh. We are praying for a diagnosis.