About Myasthenia Gravis Association
Melisa Lathrop
My story started in 2015 when I started having trouble breathing, and the ER visit would say nothing was wrong. Then came trips to the neck doctor for the pain in the back of my neck, and all they did were injections. Primary, doctors couldn’t tell me what was wrong with me or why I was exhausted and my legs felt heavy. Finally, at the eye doctor in 2017, when I couldn't see well and didn’t feel good, my eye doctor said, “I think you need a neurologist ASAP. You might have MS or MG.”
Two months later, I had my first MG crisis, but all my blood work came back negative. It was a long road to get treatment and to be believed. From being on high-dose prednisone (60 milligrams), to Imuran, Cellcept, to IVIG, to multiple crises, I was starting to have side effects from all the drugs, and my doctor didn't know what else to try. So he started me on PLEX every two weeks in 2018. I stayed on plasmapheresis for five-plus years until my last port failed due to sepsis, and I had no more veins left, due to collapsed veins and over use over the last 5 1/2 years.
I finally had gone outside of Kansas City to see another specialist who recommended a thymectomy. Due to COVID, I didn’t get it until January 2021. Approximately 18 months later, I began to feel better, and now I only do Mestinon and immunosuppressants. Remember, everyone has a unique story in their own journey, but this was mine for the last decade. Keep fighting.
Janice Kaly
My MG story started back in 1994 when my symptoms first began. My eyes started drooping, I was tired quite often, and my legs and arms would feel weak from time to time. I was referred to a local neurologist who thought I might have MG, but since all the tests were negative, he sent me to Mayo’s to try and get a diagnosis. Again, all the tests were negative except one showing I had a myopathy, but I was told it was nothing to worry about.
While at Mayo’s, I woke up in the middle of an endoscopy, which caused permanent damage to my esophagus. I went to many different local neurologists over the following years, and every single one said it was all in my head and that I was faking it. I had an event where they thought I had a TIA, which it was not. Looking back, it was probably an exacerbation.
Finally, in 2021, I was sent to a neurologist who said, “Yes, you have MG — it’s seronegative MG.” Within a month, I was in the ICU with my first exacerbation and have since finally gotten the help I needed. It’s been a long journey, but I am thankful I am finally believed.
Katie Coffman
Hey all! My name is Katie Coffman, and I'm a 36-year-old dog mama of two. I was diagnosed in 2009 with myasthenia gravis.
In April, I noticed I was having difficulty swallowing my saliva, which had grown increasingly thick. I wasn’t able to spit, and I used to have to use a Kleenex or a bottle to grab it out so I wouldn’t choke. I started having trouble swallowing food and liquids, lifting my arms, keeping my head up and eyes open, and I lost my voice.
I went to a PCP, then the ER, then an ENT over the next few months. The PCP and ER had no idea, and the ENT said that in five years I might get better, or I might degenerate and die. I was referred to a neurologist in October who knew right away it was MG. I had lost over 80 lbs, but this began my journey to symptom control.
After a positive tensilon test and an AChR antibody titer, I was started on plasmapheresis and oral medications. Over the next decade, my MG was refractory and poorly controlled. With the release of new biologics, I was able to get to a minimal symptom expression.
My dogs are adapted to my MG, so when I'm weak, we just lounge around and nap.
Carol Hunt
In 2019, on my husband’s and my 50th wedding anniversary, I started having a major issue with double vision and a drooping eye. My ophthalmologist and primary care doctors were able to rule out several possible causes, so I was sent to a neurologist who diagnosed me almost immediately. Luckily, this all happened in less than three months, so I had a fast diagnosis.
My world felt flipped over. I didn’t know anyone with MG, nor did I know what to expect. Somehow, I got in touch with Alison Foss and felt compassion and encouragement. I was put in touch with a gentleman with MG and his wife, and my husband and I met them at a restaurant for dinner. Meeting someone else with MG helped me realize that things could be somewhat normal.
I was still looking for more souls like me, and I came up with the idea of a local support group. Alison and I met in person and came up with the idea and the name “E-Siders.” The new group had its first meeting in a park due to COVID. We had three people, then another meeting where we had maybe five, and then it grew and grew. One of the members was able to secure the Agape House in Blue Springs, and the group continued to grow. Another member became a co-leader.
Our group has grown a lot. We are a very close group of friends with MG. I also started a breakfast club that meets two weeks after our group meeting. Members look forward to just hanging out together as friends, no MG talk required.
Sandy Gardner
My journey spans over 17 years with my MG, diagnosed in 2018. My story goes back to the year 2000 when my brother was diagnosed with MG. We observed his condition for over two years prior to his passing in an auto accident. We saw his decline with muscle weakness and his struggle to maintain employment. I never thought I would face the same problems ten years later.
Fear is your biggest hurdle. It creates stress and makes it difficult to get your medical plan of care in place. Then many other factors—illness, infection, and life—pile on top. But this is also a wonderful time, with so many new options that have helped MG patients so much. I am so thankful for all of the help from MGA and KU.