A little over four years ago I was diagnosed with a rare nueromuscalar disease called Myasthenia Gravis. MG is also an autoimmune disease, of which I have many. Leave it to me to be diagnosed with a disease that no one can pronounce or has even heard of!
Today was my four month check up. I go to the MDA clinic in St. Pete. My neurologist is fantastic. Today’s visit with him was around 20 minutes and about 10 minutes with his nurse Sharon. Where can you find doctors like that?
No matter how often I go to the clinic I still get a bit nervous. The whole day is stressful for me. I don’t really know why. It’s not like my doc is going to find anything wrong. I’d know it if I was worse. I’d be calling his office or at the ER before my visit. I think it’s just remembering the old stuff, the bad days. This is the office where I was told I’d need a thymectomy, surgery to remove my thymus gland. This is like open heart surgery where they crack your ribs and tie them back together. This is the office where I was told I’d need to start immunosuppressant therapy. Not good meds to be on, but very necessary in my case.
But this is the office where my doc is like my buddy, where I was told the thymectomy was working and I could lower my meds, where I went from being practically bed-ridden to being able to walk and drive, to losing my slurred speech, to being able to hold up my head.
The MDA is a great organization. They’ve helped me and my family so much. They’re just a phone call away. All of my clinic visits are free and they paid for my handy dandy scooter that I can use to get around Disney. When you get a chance to donate to them, please do.