The beginning.
I think as I write this it's so fresh in my mind - how scary it was. The not knowing, that it might be all in your head. Parents thinking your just trying to get out of your chores, then the doctors not knowing what is wrong, then to that one thought that I spoke out loud to my older sister who was expecting her first baby " Do you think I will still be here when your baby is born." It was 1973, I was 14 and I thought I was going to die. I couldn't walk or talk, chew or swallow. My eyes drooped, vision was double, my smile looked has if I was snarling at you. No one knew what was wrong. We lived in Truckee, CA & my father thought it was the high altitude so he sent me to live with my Aunt & Grandmother in the valley. My Aunt took me to a ears, nose & throat doctor. He listened to my complaints and set me up with a neurologist at UC Davis. That took 4 months to be seen. That was a very weird day for me. By now I was 15. The doctor came in, he had me lift my arms, walk across the room, follow his finger and all this time he kept asking the student docs well what do you think. All they said was maybe, I think so, then they would leave the room & return to do some more. Finally the doctor gave me a shot and I felt normal again. The students left and the doctor started writing a script for me. I finally said "do I have to take medicine." Yes he said - me: how long. Him - for the rest of your life. I asked him what do I have. Reply you have Myasthenia Gravis. Next I wanted to know if I was going to die. No But there are restriction for you to live with. Next appointment they did blood work, chest x-ray and a emg. And I met a wonderful neurologist who would be my doctor for the next 15 years, Dr. N. Vijayan who also did research on MG.
I married my husband at 16. A year after our daughter was born, the first one to be born at UC Davis to a mother with MG. So I don't know if you would say we got the royal treatment, but every test theycould think of was done, except one. We said no, it was a stress test to see how the baby would handle labor. We questioned them about the chance of going in to labor early and it was a possability. We decided if our baby could be born with neonatal MG we weren't going to add premature to that. When she was born she did have neonatal MG, she stayed two weeks in the hospital - 9 of those in ICU. She was on mestinon, she couldn't swallow, cry or suck and she couldn't hold her eyes open. When she came home I was petrified. I knew how to manage my MG, but this little baby. She had to be held upright to eat, squirt the milk in a little at a time suction her mouth out & start again. Feedings took about 2 hours. It took almost 3 months for it to clear her system. She never had any more symptoms. She adapted to my symptoms, she back-up to me when wanting to be picked, would chew her food using her hand to help move her jaw like I did and so on.
When I was 19 I was having to use more & more mestinon, up to about 15 to 20 60mg a day. My neuro said it was time for a thymectomy. It took 2 hours. When I woke up there was tubes coming out everywhere. I was completely off my meds to see if I would have a remission right then. I didn't. We had to fight the doctors to increase my mestinon so I could get off the respirator. My neurologist finally convinced them, so finally after a week & 1/2 I was off the respirator and moved from ICU. It took ten years, but I was finally off medicine.
But now 24 years later my eyes will droop now and then, sometimes I will go to lift something or open a lid and I can't. My vision will blurr. 8 months ago a man fell asleep at the wheel & rear ended my car, I was at a stop light. I now have a torn disc. I asked my regular doc if my symptoms could be from that, she said she didn't think so, she thinks it's my MG. not what I wanted to hear. I see a spine surgeon at the end of August, I will ask that question again.
I married my husband at 16. A year after our daughter was born, the first one to be born at UC Davis to a mother with MG. So I don't know if you would say we got the royal treatment, but every test theycould think of was done, except one. We said no, it was a stress test to see how the baby would handle labor. We questioned them about the chance of going in to labor early and it was a possability. We decided if our baby could be born with neonatal MG we weren't going to add premature to that. When she was born she did have neonatal MG, she stayed two weeks in the hospital - 9 of those in ICU. She was on mestinon, she couldn't swallow, cry or suck and she couldn't hold her eyes open. When she came home I was petrified. I knew how to manage my MG, but this little baby. She had to be held upright to eat, squirt the milk in a little at a time suction her mouth out & start again. Feedings took about 2 hours. It took almost 3 months for it to clear her system. She never had any more symptoms. She adapted to my symptoms, she back-up to me when wanting to be picked, would chew her food using her hand to help move her jaw like I did and so on.
When I was 19 I was having to use more & more mestinon, up to about 15 to 20 60mg a day. My neuro said it was time for a thymectomy. It took 2 hours. When I woke up there was tubes coming out everywhere. I was completely off my meds to see if I would have a remission right then. I didn't. We had to fight the doctors to increase my mestinon so I could get off the respirator. My neurologist finally convinced them, so finally after a week & 1/2 I was off the respirator and moved from ICU. It took ten years, but I was finally off medicine.
But now 24 years later my eyes will droop now and then, sometimes I will go to lift something or open a lid and I can't. My vision will blurr. 8 months ago a man fell asleep at the wheel & rear ended my car, I was at a stop light. I now have a torn disc. I asked my regular doc if my symptoms could be from that, she said she didn't think so, she thinks it's my MG. not what I wanted to hear. I see a spine surgeon at the end of August, I will ask that question again.
Replies
Hi Debbie! Wow, you\'ve dealt with this a long time. I know one of the ladies from Wisconsin, Gail, that is on here has had MG from the 1970\'s. Glad to meet you.
It\'s nice to meet you. It has been long time. With the chance that my remission might be over its helpful to see that there is some one to talk to. I think my husband thinks if we don\'t talk about it it\'s not happening.
Hi Debbie. Thank you for sharing your story. You must have so much strength to have been through what you have from such an early age. Especially to cope as a young mum with MG. I\'m glad you have had those years in remission. Sounds like it was a hell of a journey took before that happened. I hope your remission continues and that your disc problem can be treated without surgery or too much medical intervention. Best wishes. Gez