October 2012 was one of the happiest times in my life. I had just married the man of my dreams in September. We had a wonderful, relaxing honeymoon and I was floating on cloud 9. I remember during this time the way I pronounced my words seemed “different”. I was having an issue with my wisdom tooth so I assumed this was the cause. Shortly thereafter, my speech was completely slurred. I scheduled an appointment with the oral surgeon (still thinking it was the tooth). When I told the oral surgeon about my slurred speech, he refused to extract the tooth. He suspected Bell’s Palsy. He wanted me to get it checked out. I’m glad he did. Over the next few weeks, my symptoms progressed fairly quickly. Slurred speech was accompanied by difficulty swallowing, weakness in my eyes, difficulty chewing, weakness in my neck and shoulders.
I made countless visits to my primary physician and the ER. Finally, they diagnosed me with anxiety. That’s right; anxiety. My symptoms were “apparently” the result of stress and I was referred to a psychologist and given anti-depressants and Xanax. Hmm, how can this be stress when I am overwhelmed with happiness? I’m a newlywed for goodness sake! I knew deep down that what I was going through was not the result of stress.
Something was wrong and I felt like nobody was listening to me.
I received a referral to a Neurologist and had several MRI’s and CT scans. In my mind, I was hoping for an answer, but I really didn’t want to know. I felt that whatever they found would determine my fate. God became my best friend. He gave (and still gives) me a sense of peace because I know that he protects me. The neurologist decided to give me muscle relaxers (big mistake). She could not pinpoint what was wrong. I kept a journal of everything I was experiencing. Every time I pulled it out to explain my symptoms, I felt like I was being dismissed. I was so proud of myself for keeping a journal. I thought this information would be helpful for doctor’s to figure out what was wrong with me.
Their response made me feel as though I was burdening them.
Finally, the neurologist suspected MG and had me do the blood work. I worried and worried and worried some more. I was scared of MG. As I read about it, I automatically assumed that a surgeon was going to split open my chest to remove my thymus gland. The test results came back and I got that fated call. “Good news! You don’t have MG. There is nothing more I can do for you so I’ll refer you to rheumatology”.
I just want to know what is wrong with me! Somebody help me please!
Of course, the rheumatologist drew thousands of tubes of blood to test. At least that’s what it felt like. And of course, nothing was found. She referred me back to neurology and guess what else she said? You guessed it. “Maybe you’re just experiencing stress.” Would I never get my answers?
I faithfully met with the psychologist. She taught me deep breathing techniques and ways to relax my mind. Thankfully, the psychologist must have a medical doctor sit in on the counseling sessions. The medical doctor knew something was wrong. She decided to put me on 60mg of prednisone for 1 week. After day 2, my symptoms were clear. Yessssss! I can speak, I can swallow, and I can chew! This doctor was a God send.
She knew it was something autoimmune and told me to contact her if my symptoms clear up. I was symptom free for about 3 weeks. Then, the symptoms slowly started coming back. I received prednisone again. They cleared up, but not as much as the first time I was given a dose of this demon drug. Eventually, all of my symptoms came back, this time with full force. Only this time, I now was able to see two of everything. Cool, right? Not! Imagine driving with double vision and not knowing which lane you’re in. I was hospitalized again.
The neurologist in the hospital was positive it was MG. I told her that I was tested and that I didn’t have it. She requested my records from the initial neurologist. She was overly ecstatic when she told me that I did in fact have MG. I must admit that I was happy too.
I finally knew that what I was experiencing had a name.
It was not stress, it was Myasthenia Gravis. She thoroughly reviewed the results of my initial test. She pointed out that I was MuSK positive. The first neurologist missed this. Do you mean to tell me I could have been diagnosed for 4 months, but she missed it? I immediately started on high doses of Prednisone (100mg) and CellCept. I remained in the hospital for 1 week. I was discharged on a Saturday and ended up back in ER on Sunday. Apparently, I developed the flu and this exacerbated my symptoms. I was treated for MG. This time with IVIG and was give Tamiflu for the Flu. Another week in the hospital went by. I was discharged and found an outpatient neurologist to follow up with.
My current neurologist noticed that I still had some weakness after my bout with MG and the flu. He decided that I needed plasmapheresis. I did this for 5 days. It took several weeks for me to regain my energy. I felt much better once I did. Finally, my MG was under control. Then life hit me with another curveball. I had a near death experience when I almost passed out due to having 4 blood clots in my lungs. Fast forward, no clotting disorder was ever found. My hematologist was only able to conclude that the prednisone thickened my blood and caused the clots. I am on blood thinner for life. My MG is in remission. I still suffer from fatigue, but I am an MG WARRIOR!
6 thoughts on “Something Was Wrong, But I Couldn’t Get Anyone to Listen”
I love you, Bestie! I’m glad you are strong!! (I remember.) You beat this!
Thank you so much for sharing. It’s incredible how much we can endure before it can potentially become life threatening. I have Hashimoto and a thyroid condition. It’s difficult and rarely do I feel like the “old” me but I give thanks for those days when I feel like I can take on the world.
It’s unfortunate that sometimes it takes for someone we know to suffer from a rear disease to even know that it exists. Thank you for sharing your story and bringing awareness to MG. My LS is a warrior! Love you!
May God keep his loving arms wrapped around you. Thanks for sharing your stories it will definitely help someone.
Soror thanks sooooo much for sharing your testimony. Many will be helped and made stronger and some will find courage to share their own stories. So proud of you for fighting for answers
Thanks , I went through the same stuff . But. Now I’m afraid. My doctor hasn’t ever had a case . What do I hAve to do to. Fines experts ? I’m 66 years old and they that I can still work a 8 hr. Day. They don’t know hoeing feel at the end of the dAy. I just need to talk to other people that has same MG