What the Blog

It's been 45 days since I was diagnosed with Myasthenia Gravis. 45 days ago, I had never even heard of MG (the acronym for Myasthenia Gravis). MG is a neuromuscular autoimmune disease, it affects the voluntary muscles of the body. In my body, I have Bulbar MG, which means it affects my facial muscles, swallowing muscles, speech muscles, arm muscles and leg muscles. My body produces an antibody that attacks the neuromuscular receptor making it 80% harder for the muscles to respond to the signals my brain sends out.

The Back Story:
Back in February, I started having some issues with driving, my eyes would get tired and my vision would get a little blurred. I figured I was overdoing it and tried to cut back on everything going on. I was working full time, going to school full time (an online program), transporting dogs to foster and forever homes every weekend, and fostering a dog in my own home as well. So I started to cut back on transporting. I started to get double vision and freaked out, I called my doctor and she told me to go to the eye doctor to get checked out. I did, and he noticed my eyelids drooping a little bit, suggesting an MRI to be on the safe side, although he didn't think it was anything to be concerned about.

I had the MRI on my head and all came back normal. By this time, I was having a hard time swallowing food and sometimes when I would talk, my speech was slurred and sounded funny. I went back to my doctor, she said it was severe stress and gave me an antidepressant. It didn't help. My family was worried about me, I was worried about me, I thought maybe I had MS or something along those lines. I went to my moms doctor for a second opinion, she ran a full blood panel, allergy panel, ordered a CT of my head and a chest X-Ray, everything came back clear (expect I am apparently allergic to shrimp - pretty disappointing in my opinion). She decided it was time to refer me to a neurologist to see what was going on as clearly it was not just stress and anxiety. Here in Knoxville, it is almost impossible to get in to see a neurologist without having a diagnosis and it was going to be months before we could get in to see someone.

On 3/22/16 - a particularly bad day for me symptom wise, I left work early and went to the emergency room at my mother and sister urging me to go. At this point I had been having symptoms for over 6 weeks, weakness in my arms and legs, I couldn't eat solid food and basically living off smoothies and soup, I sounded slurred and incoherent when speaking, my face was drooping and I had severe double vision daily. I could barely hold my head up and my back/neck constantly hurt from the effort. I walked in presenting as a stroke victim.

I was lucky, the ER doctor, had seen Myasthenia Gravis a couple of times in 20 years of experience and he immediately suspected that is what I had. He called the staff neurologist and they both performed a Tensilon test. If positive, the Tensilon (a IV medication) immediately stops all symptoms for a few minutes. I am not going to lie, I felt great for 5 minutes, the first time in months that I felt normal. They also sent my blood to the Mayo Clinic to test for the antibodies that block my muscle receptors (these results took a week to come back, but I also tested positive for the antibodies). We had a diagnosis. I was admitted to the hospital overnight, and started on a high dose of Prednisone and Mestinon. Prednisone is a steroid that suppresses my immune system to keep my body from creating the antibodies and Mestinon makes my muscle receptors more receptive. The medication helps but I am still weak, I get exhausted easily and feel like I am walking through water, I can barely drive and the grocery store is the only outing I can handle on my own.

It has been 45 days since I was diagnosed. Everything in my life has changed. I no longer have a job, I lost it because of this diagnosis. I took a three month break from school and have two major surgeries coming up. Thankfully my husband works and we are barely scrapping by. I have a wonderful support system with my family. My goal is to track what this disease has done to me while I go though medical treatment and hopefully into remission. There is so much more that has happened. But for now, this is the beginning of my new life and journey with Myasthenia Gravis.

Till next time,
T.