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In August 2010, I began having trouble speaking. Not like loss of voice, but the words would actually not come out. I felt like something was squeezing my throat and tongue. After this continued of a week, I went to the doctor. She told me I was having spontaneous contractions of my throat and prescribed medication. After a few weeks, it got worse. I called my doctor back and she said it was anxiety that had caused me to forget how to talk. She referred me to a speech therapist. I called the speech therapist, told her my symptoms, and she said there wasn’t anything she could do for me. Again, I called my doctor and asked for a referral to an ENT. She reluctantly gave me one. I saw the ENT in early November. He said it was acid reflux and prescribed medication. Yet again, it got worse. At this time, I was having problems swallowing, barely could talk, my eyes wouldn’t close tight, I couldn’t lift my neck very well, and I couldn’t smile. I found a different ENT. Dr. Peter Shapiro was wonderful to me. We had to play my voicemail so he could hear how I normally sounded and after talking with us for about 10 minutes, he said it was neurological. After hearing what I had been through, he promised me he wouldn’t stop until he figured out what was wrong. He sent me for a MRI to rule out a stroke and called in a favor to a friend who was a neurologist to see me soon. After 6 months, I saw the neurologist, Dr. Hedges. She did an exam and blood work. She was shocked by what I had been through. She said she thought it was Myasthenia Gravis from my symptoms, but couldn’t say for sure until the blood work came back.
On January 06, 2011, I received the phone call from her office saying my test came back positive for Myasthenia Gravis. During all this, my husband and I had been trying to get pregnant. Due to all the medical concerns we had stopped trying. Later that evening of the 6th, I took a pregnancy test because I was feeling sick to my stomach. It came back positive. Being pregnant complicated the treatment of the MG. Normally you would take prednisone or mestinon. Prednisone can cause birth defects in the first trimester and mestinon can cause premature labor. So I had an IVIG for the first trimester. I would be placed on an IV and over 5hrs for 4 days, I would be given globulin. (Thank you to all who give blood! You made that possible!)
After the first trimester, I was given prednisone. The prednisone worked, but caused me to get gestational diabetes. The baby was also at risk of being born with MG, but it would slowly filter out of his system after a few days. Luckily for us, Jacek was born without it, but was monitored closely for MG and his heart defect.
In the last few weeks, I had a MG “crisis”. Out of the blue, my MG became horrible again. I couldn’t speak and swallow became difficult. I was placed on mestinon, which helps, but causes terrible stomach cramps. They also increased my prednisone. The doctor said I had 2 weeks to show improvement or I was being admitted to the hospital because of the aggressiveness of this flare up. Today, January 22, 2012, I can talk of the first time in a week. It is looking up.
Without research and clinics funded through walks like these, I might be still looking for what was wrong with me, Jacek birth and recovery could have been a lot more difficult, and I wouldn’t be able to live a normal life. My hope is with more research, maybe a drug or cure can be found so I don’t have to be on medications that cause terrible side effects.
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