My Update

imageThere are many things wrong with me, and if you know me you know that already. I can’t spell if my life depended on it. I’m super clumsy, and not the most coordinated. I have a huge problem pronouncing words with lots of letters and syllables.

I am a junior at Highland School of Technology, and since my freshman year I have been falling…not just like a trip or two, I fall a lot. I fall up and down stairs, I fall on flat surfaces, dear goodness don’t give me an uneven surface. At this point I am really good at falling. Most people at school, if someone falls down the stairs the first question they ask is, “Was it Sam?” and if it is (which it usually is) no one is worried because I am really good at it. People used to laugh about it, but now it is so old they just keep going. I have progressively been falling more and more.

Last summer at my Grandma Betty’s house, both my grandma and mom discovered that my eye lid would sag. Everything was fine because it went away after a while, but over the past few months, even that has gotten a lot worse. I would stand up and my eyes would go black. That’s how I describe what happens when you stand up too fast and most people just get a little light headed, well for me my eyes go completely black. I can’t see anything, I can hear, and feel. I know that my eyes are open, I just can’t see anything. A few months ago in my Anatomy and Physiology class, we were reading a book. I read a lot faster than a lot of people and so when I finished I just put the book down and looked to see what everyone else was doing and if I was the only one done. When I looked up I discovered that the room I was in was spinning around. I could feel myself being moved by the room. It was really weird, and when I put my head down and closed my eyes, it felt worse but I didn’t want to see the room doing like that because I knew rooms don’t spin…usually. image

I thought maybe it was because I was just to focused on the book so maybe I didn’t have my eyes adjusted right. Later that day I was crying because I couldn’t get anything to stay still. I was in my fourth period class when the room started spinning during a quiz. It was dreadful. When I told mom about the spinning she told me that I was going to the doctor. So we went that Thursday to Dr. Brown’s office, my family doctor, and he made me do some blood tests, and some things like walking and looking around to see how I was doing. He said that there was definitely something wrong with me. He referred me to a Neurologist.

We went to the neurologist, and he was really kind of fun. He was a little Indian man, Dr. Mehnta (that is spelled phonetically), he made me do the same thing Dr. Brown made me do, some walking and some looking around, and some sitting then standing. He told me at the end of it that the most worrisome thing about me was my eye. He told me that there was definitely something wrong with me (thank you, my other doctor already told me that). He said that his main worry was that I had a disease called myasthenia gravis. I didn’t know what that meant but, ok. He said that he was going to send me to do an MRI of my brain because there was definitely something wrong with it because it isn’t sending the signals it needs to, to keep my eye open the way it is supposed to be. Then I was going to go get some blood tests done because maybe my blood wasn’t holding enough oxygen and that is why I get dizzy. Then I was going to go get my spine and legs x-rayed because maybe there were some bends and twists that might be making me fall. And then I was going to have a leg blood muscle thing because if my muscles aren’t working properly I might really have myasthenia gravis. Then I would go to therapy for my balance so that if maybe I’m just clumsy it would help, and if I have anything it would help as well.  Lastly, I would head to an eye doctor to check that out too.

imageWell I went and got my x-rays, and blood tests, and MRI. They were all pretty cool. My x-rays were fun because I got to wear a hospital gown. The blood tests were horrible, the lady had to take three vials of blood and it took her forever to get it, and she had to poke me a total of 11 times, I counted after number 3. The MRI was really long, they put a cage over my head and then half way through they had to inject me with something that was supposed to do something I don’t even know.

Then I had to go do my leg thing. They told me that I had to wear shorts but I didn’t know why. I didn’t know what I was going to do. When I got into the room with my mom there was a computer there with lots of cords and stuff. The first thing I saw was the Taser™. I showed mom and she told me it wasn’t a Taser™. When the doctor came in, he explained that he was going to send electric shocks through my leg to see how my nerves are working. So yes, it was a Taser™, it didn’t hurt at first, but it progressively got worse. It was weird.  Then when he was done tasing me he put needles in my leg to test my muscles. It hurt too, but that was ok because I am good at dealing with pain.

After all that was done he said that he would go over the results and the next time we came in we would hear about it. Then I went to the Rehab center to learn how to walk (officially called Balance Therapy). That was kind of fun. I did a lot of exercises and my doctor dude was a student still and was really fun. He gave me homework to do so that I would still be working on my balance while I wasn’t there. He has me coming back two more times, just in case. We still haven’t heard anything about what is wrong with me, just that there is something wrong with me. image

I looked up myasthenia gravis and discovered that it is a disease that the first signs of are your eye lid sagging. What happens is your muscles are slowly deteriorating, and as it progresses you can’t move your limbs and then your muscles in your throat and neck and chest stop working and you can’t swallow, and then you can’t breathe because your lungs collapse. That is the disease that they are most worried about me having.

So far there are no results back yet, and I still have a lot of testing that I have to go through. My dad told me that there were a lot of people out there, at church, family, friends, that were worried about me and he didn’t know what he should tell them, he asked me to write up a blog that would say whatever I felt willing to say. I really have nothing to hide, it’s just I don’t want people to freak out or anything. I appreciate prayers. If you are looking for something to specifically pray for me about, I need to trust God more. I have been really scared lately, as people have been coming to me and telling me about how much they love me and how they are praying for me. I love that, but I think it freaks me out a little bit. I guess I think people pray for people that really need help and are dying and stuff and it makes me feel like my situation is more serious that what it is. Now I know that is not true because I pray for people all the time that don’t have “serious situations”.

I just need to realize that God is in control, and trust Him.

Thanks Guys,

Samantha J. Hines

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Comments

  1. Fantastic job writing this up. I am very proud of you and can tell that you worked hard at writing it. You even remembered to use a spell checker! Bravo.

    Thanks for sharing.

    -T

  2. […] Go Here and read what Ms Samantha has to say. […]

  3. Samantha,

    You have written very well, full of information and feelings wrapped around a story. This is a tough subject and you are still young. Assuming your diagnosis is correct, Aristotle Onassis had a similar condition late in his life. I am cheering for you…

    Bill

  4. Thanks Uncle Tommy, and Mr LaRocque. I really did work hard at writing it, and I even used spell checker, and my mom…thanks for cheering for me Mr. LaRocque, I really appreciate it. I love you Uncle Tommy.

    Sam

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