Saturday, January 29, 2011

Myasthenia Gravis info...

I know some of you are not familiar with Myasthenia Gravis so I thought I would give ya some information so you know what I was talking about in my last post about the flu.
Here is a link that gives wonderful information...
http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm#165423153
Here is some information on me and my time with M.G.
I was diagnosed when I was 16 (1991) when my mom noticed after I came home from an overnight trip for school that my eye looked like it was "drooping" (My mom knew about MG since my aunt has it as well). We went to the doctor the next day and they weren't ready to diagnose me right away even though my left eye was about halfway shut and said, let's just wait and see if it might be an infection affecting her eye. By the next day, my eye was completely shut with just a slit opening. We went back to the doctor and they sent me to a neurologist. They did the edrophonium test and immediately my eye opened. That was the definitive diagnosis. I was placed on Mestinon (the drug of choice for MG) and have lived with it ever since.
In 1994, I was having more difiicult symptoms and went to a new neurologist who did a CT scan and found out I had a Thymoma (a benign tumor on the thymus gland) and sent me for surgery to have it removed. Yes, today I have about a 5 inch scar down my chest (it was the same type of surgery as open heart since the thymus gland is located in the chest wall). I did very well after surgery and needed limited medication and we almost thought I was one of the rare cases that had been "cured". Unfortunately not.
In 1997, I went into my first "real crisis" and had undergone 2 weeks treatment of plasmapheresis and was placed on high dose steroids at that time. I weaned myself off the steroids slowly after 8 months since they were awful and causing me more issues than they were helping. (yes, my neurologist knew). Again I did very well and had even gone off the medicine for a while again until...
In 2004, I went into another crisis and needed plasmapheresis again.
Since then I have had some issues and just take the Mestinon at times and do fine but there are times as in both of my crisises that the medicine just does not work. I have been tested for all antibodies associated with MG and have been negative for all that they know about. However, the only thing that will "pull me out" of crisis is plasmapheresis so they are removing something that my body does not like :)
Usually my first symptom of MG is that my left eye will droop and my vision gets a little blurry. Second, my right eye will start but never closes as much as the left one does. Then I will get very weak in my arms and legs and every neurologist I have ever been to say they can tell in my voice as well (I can't figure that out but they can :P).
So that is me and MG in a nutshell - I thank God that it has never affected my breathing and I have never had to be on a ventilator because of it even though I have met those that have :(
God is good and there are months I can go without medication and you would never know I have it and then there are other times when I need something more. I am grateful that God has kept me safe and that I pretty much continue to function as any "normal" person the majority of the time.

2 comments:

Braley Mama said...

That is a lot to go through. SO proud of you that you are such a strong mama. I love you sweet friend. Thanks for sharing with me, and now I know what to pray for more specifically :O)

Katie said...

Praying for you Krysten! Hope you are feeling better from Thursday night. Sorry Kira had the flu after all! :P