Well, not really, but it was better than what I thought I had...a tumor, Multiple Sclerosis (MS), and all the other things they tried to use to explain what was going on with me.
My name is Jessie and I was 16 years old when the doctors told me that I had this rare disease that only affects a few people in the U.S.
I am originally from Miami, but recently I just moved to Lakeland, FL. I wanted to put this page together to get my story out, and because there's barely anything out there about this disease.
For quite a few years I was having weakness in my arm and leg and sometimes they would go numb, but it wasn't often enough that my family and I thought anything of it.
However in the summer of 2003 it got so bad that I would fall if walking and my face would go numb so we were referred to a neurologist who performed a battery of tests and came to the decision that I had Multiple Sclerosis. Thankfully, he wasn't a very good doctor and had failed to read the results of my MRI which clearly showed my condition.
And that's when the research tools came out. My family and I researched everything we could about Moyamoya and who the experts were. There are but a handful of doctors that are actually experts on this disease. Unfortunately there are no cures, but there is a very effective treatment: brain surgery.
Naturally, I wasn't about to let just anybody go into my head! So with research and through a very helpful website I found Dr. Gary Stienberg in California at Stanford. Insurance isn't a fun group of people to deal with, but through much work, prayer, support, and a stroke I was able to see Dr. Steinberg in California. That's how important having the right surgeon is with this disease.
Dr. Steinberg did an incredible job with the surgery and I passed through with flying colors.
My second surgery was done with an equally good doctor, though less known for Moyamoya, Dr. Stephen Lewis. This one was done in Gainesville, much closer to home.
My story is much longer and more complicated than all that, but that's the gist of it. Moyamoya is a very complicated disease that is very serious and very scary for both the person who has it and the family and friends of that person.
Please, feel free to share your story or to ask questions, I am more than happy to help.