When I First Got Sick.
It was the summer after 7th grade when I started to feel weakness. At first my parents thought I was just becoming a lazy teenager. I wasn’t going out to play with my friends like I use to. I was doing a lot of sitting on the couch and watching TV. It got worse and worse as the weeks went by.
When I finally asked for help I was finding it hard to get up from the chair to go to the bathroom. I remember sitting on the couch and being so thirsty. But it was such a chore to get up that I would wait until I was really thirsty so I could cut down on the trips. I told my mom how hard it was getting to get up and she took me to the doctors. The doctor said it was probably just a flu bug and to keep an eye on me.
A couple of days later I started having trouble focusing. I told my mom and she looked at my eyes. She told me to stop doing that. I didn’t know what she was talking about. I went to the mirror and my left eye was completely turned in. I was cockeyed. I got really scared and started to cry. My mom and dad took me to the emergency room. The doctors didn’t have a clue what was going on. They just told my mom to take to an eye doctor. He was worthless. Talking about eye patches and wearing glasses. Then I went in for a test where they hooked me up to a bunch of wires to test my nervous system. That doctor told us it might be neurological so we went to see a neurologist. Dr Cella. He asked me a couple of questions and did a couple of strength tests. He showed my mom how he could push my arms down with one finger even though I was trying as hard as I could to keep them up. Then he gave me a shot of something and I felt better. He looked at my mom and told her I have Myasthenia Gravis. We both said, “What’s that?” in unison. Boy did we find out.
I started taking mestinon 3 times a day. It helped a little. I could start going to school again, but was still pretty sick. I had an MRI at 14 and they said my thymus was slightly enlarged and had to go. I was scheduled for surgery in 3 months.
During that time I started to develop a cough. The doctors said I had to get better before they could operate. They put me on something for pneumonia but the cough just got worse. My doctor wanted an x-ray of my chest to look at my lungs. The x-ray was all cloudy so I got another MRI. I remember he came in the office after looking at the MRI and told me I wasn’t going home. It seems that my thymus gland was now the size of a deflated basketball and had to go right away. The tumor was causing my breathing problems.
I went in the next day for the thymectomy. The surgery took 13 hours. I had to have split sternum surgery because my thymus was so big. I was in the ICU for a couple of days and I went home after 10 days total.
As I recovered from the surgery I started feel in better and better. My face stopped drooping and my smile got straight again. My eye, however, was still worthless. I went to an eye doctor. He said that the muscles in my eye were so weak that it would take surgery to correct it. I was now 15. I knew that if I didn’t get my eye fixed I would probably never have a girlfriend. That’s a big deal for 15 year old boy who had yet to kiss a girl. I got the surgery and my eye looked better after the swelling went down. I still had double vision though. After a few months the eye got stronger and the double vision went away.
I have been in remission now for almost 25 years. I still get tired and feel week easier than most people, but it nothing like when I was a kid.
Dr. Cella saved my life that day. I haven’t talked to him in years. I often wonder if he would remember me.
When I finally asked for help I was finding it hard to get up from the chair to go to the bathroom. I remember sitting on the couch and being so thirsty. But it was such a chore to get up that I would wait until I was really thirsty so I could cut down on the trips. I told my mom how hard it was getting to get up and she took me to the doctors. The doctor said it was probably just a flu bug and to keep an eye on me.
A couple of days later I started having trouble focusing. I told my mom and she looked at my eyes. She told me to stop doing that. I didn’t know what she was talking about. I went to the mirror and my left eye was completely turned in. I was cockeyed. I got really scared and started to cry. My mom and dad took me to the emergency room. The doctors didn’t have a clue what was going on. They just told my mom to take to an eye doctor. He was worthless. Talking about eye patches and wearing glasses. Then I went in for a test where they hooked me up to a bunch of wires to test my nervous system. That doctor told us it might be neurological so we went to see a neurologist. Dr Cella. He asked me a couple of questions and did a couple of strength tests. He showed my mom how he could push my arms down with one finger even though I was trying as hard as I could to keep them up. Then he gave me a shot of something and I felt better. He looked at my mom and told her I have Myasthenia Gravis. We both said, “What’s that?” in unison. Boy did we find out.
I started taking mestinon 3 times a day. It helped a little. I could start going to school again, but was still pretty sick. I had an MRI at 14 and they said my thymus was slightly enlarged and had to go. I was scheduled for surgery in 3 months.
During that time I started to develop a cough. The doctors said I had to get better before they could operate. They put me on something for pneumonia but the cough just got worse. My doctor wanted an x-ray of my chest to look at my lungs. The x-ray was all cloudy so I got another MRI. I remember he came in the office after looking at the MRI and told me I wasn’t going home. It seems that my thymus gland was now the size of a deflated basketball and had to go right away. The tumor was causing my breathing problems.
I went in the next day for the thymectomy. The surgery took 13 hours. I had to have split sternum surgery because my thymus was so big. I was in the ICU for a couple of days and I went home after 10 days total.
As I recovered from the surgery I started feel in better and better. My face stopped drooping and my smile got straight again. My eye, however, was still worthless. I went to an eye doctor. He said that the muscles in my eye were so weak that it would take surgery to correct it. I was now 15. I knew that if I didn’t get my eye fixed I would probably never have a girlfriend. That’s a big deal for 15 year old boy who had yet to kiss a girl. I got the surgery and my eye looked better after the swelling went down. I still had double vision though. After a few months the eye got stronger and the double vision went away.
I have been in remission now for almost 25 years. I still get tired and feel week easier than most people, but it nothing like when I was a kid.
Dr. Cella saved my life that day. I haven’t talked to him in years. I often wonder if he would remember me.
Replies
25 years!! It is so nice to hear good news. Thank you!
Wow - what a story! What an inspiration - to all of us, here!
Absolutely - try to find Dr. Cella. Dr. Cella was way ahead of the times!
Wouldn\'t it be great?
To tell Dr. Cella: what a positive, life-saving impact that was!
(Dr. Cella would be sure to remember you!)
- Ross
We don\'t hear many great stories like yours. Some people get better, and then wander away (that\'s understandable).
You got better? And you\'re reaching out! Can\'t tell you - how much we all like that!
When you get a chance? No hurry, somewhere down the line.
You should tell your story above, in the form of a \'\'topic discussion\'\'.
To reach more people, here on this support group.
It\'s such an inspirational thing, something more of us need to hear!
Like I said, no hurry - when you get a chance.
My what a great story you shared of your life! I am so glad you shared with us and it is a breath of fresh air to hear a happy outcome.. Annette
You guys are making me cry!
Get used to that! This group is the greatest and I am VERY glad you have joined us! Love, Becca
I so wish I had a support system like this as a kid. It was so lonely at times. Nobody understood. You gotta love the internet! You guys are great!
This support group, right here?
IS - one of the best things on the internet - anywhere in the world!
Hi I\'m new here. Was searching for info on how long remission can last for MG and came across this site. Saw your story and guess you could say it was comforting. I was 14 when I started having symptoms, was 15 before being diagnosed. Was sent to U.C. Davis and the head doctor from U.C.L.A. in charge of MG research was there, he diagnosed me. Had thymectomy at 19, ten years later no meds. 24 years since then and I\'m starting to have symptoms again.