The first time I heard the diagnosis Myasthenia Gravis it was from a local neurologist that did not believe in me or my symptoms or that I had Myasthenia Gravis!
About a month earlier I spent a week in my local hospital after loosing my ability to walk one day at work. I had been noticing other strange symptoms but never put them together. I was working full time as a teacher’s assistant to students with emotional and behavioral disorders. The job was intense, you had to think and move fast!! Students questioned me why my hands were always shaking, why was I not playing at P.E. anymore with them. Why was I walking so slow, why was my voice sounding funny? Children pick up things very quickly and as I was dismissing my notable symptoms, my students kept asking questions. I had previously had 3 back surgeries including a spinal fusion, so I contributed my leg weakness to ongoing issues with my back but it did not explain why my arms felt so fatigued or my voice getting hoarse. My symptoms progressed to the point where they could no longer be ignored, I needed answers!
I was admitted to my local hospital and had many tests that did not reveal any answers to explain the myriad of symptoms I was experiencing. I was seen by the neurologist on call at the hospital who told me he had no idea what was wrong with me and quite frankly he made it clear that if more tests continued to come back negative, that meant it was all in my head!
I remember the feeling of despair that a doctor refused to believe me, that he dismissed me!
I was discharged to a rehab facility where I received OT, PT and speech therapy. I couldn’t do anything for myself without help. I feared for my future. I did receive advice at the rehab center that looking back probably saved my life. I was told to find a research hospital and a specialist who may help me with a diagnosis. I did just that, however the wait time for a new patient was significant so I returned home with therapists visiting me helping me to use my walker and adjust to the normal daily living skills that we all depend on.
I had a follow up appointment with the neurologist that had seen me at the hospital. I told him I was waiting to see a specialist at USF in Tampa. He made a call to my new specialist from his office and still claimed he had no idea what was wrong with me, if anything at all!! A few days later he called me and said he spoke with the specialist I was waiting to see and she wanted me to start on Mestinon while I waited to see her as she suspected Myasthenia Gravis. He proceeded to tell me that he believed I did not have MG and did not approve of giving me the medication but complied at her request.
It was then that I started reading about Myasthenia Gravis and everything came full circle. There it was, in print, all my symptoms!! I took the medication and it helped but there was no dramatic change.
The day finally arrived, I got to meet the specialist Dr Lara Katzin from USF in Tampa, a neuromuscular specialist who only treats MG and ALS patients. As soon as she started her exam, she said she knew for certain I had Myasthenia Gravis and unfortunately had several patients like myself who had been dismissed by other doctors. I wanted to rejoice, not because I had a disease, but because I had an answer, an explanation that I was not crazy and a Dr that believed in me!!
It took a SFEMG to confirm my diagnosis as my blood work tested negative for the MG antibodies. I was immediately started on IVIG treatment in the hospital. I was very sick from side effects in the beginning. I eventually switched to plasmapheresis treatments, 5 days every 3 weeks. I was promptly scheduled for a thymectomy (removal of the thymus gland) as my Dr wanted an aggressive treatment plan to hopefully minimize some of the disabling symptoms with Myasthenia Gravis.
My particular MG is refractory, meaning I do not respond well to commonly used therapies. I was unable to continue working. I missed my job and my students, but I became focused on recovering from the dramatic affects of Myasthenia Gravis. It’s been over 3 years now, and MG still controls my life as my abilities are reliant upon my treatments and how much activity I can do.
I have spent many, many days in the hospital. I have tried lots of medications. I have held such high hopes of better control over my MG and even remission!!
Myasthenia Gravis has completely changed everything in my life.
I have to prepare differently now when we do things as a family, work around my treatment schedule and bringing the wheelchair, keeping me in the shade and a place to rest if I need it. I cannot just get up and go anymore, my independence is slowly slipping away and I fear how long my body can endure all these treatments as I tire very quickly these days. I’m grateful for a wonderful Doctor, a caring nurse for IVIG, a loving and supportive husband and 3 children who love me despite the disease and some missed events over the last 3 years.
I’ve always worked to help others, my joy comes from doing for others. MG awareness became my passion to give me the opportunity to help other people fighting this disease like listening to a parent who needs support as they witness their children struggle or sharing advice about treatments and what I have learned. If I can make a difference in someone’s life by sharing awareness then it’s all worth it. There are many times when I have felt very alone because no one has ever heard of MG, which is what inspired the hashtag #IhaveheardofMG
I do not know what the future holds, as my disease process seems to be getting worse.
I am still adjusting and learning to live in the moment and to be grateful for my family and the support of the MG community. MG is a very lonely disease because people have difficulty understanding something they know nothing about. I didn’t know about the disease either until it entered my life.
My hope is that patients in the future have faster diagnosis, a doctors trust and knowledge, better treatments and of course a cure! My hope is for public awareness so that an MG patient is not left feeling alone and isolated and that people can recognize and empathize with a person struggling with MG. I want everyone, everywhere to one day say I HAVE HEARD OF MG!