Personal Stories

Notes from MG patients:

My biggest challenge with MG is being able to focus on an object – like someone addressing a group – teacher, preacher – or movie screen, TV or computer screen. I have been able to continue working out at the Fitness Center and do not appear to have general MG developing, for which I am very grateful.

I, and my wife, have considered the Support Group very helpful from the very beginning. My advice to other MG patients and their loved ones is to try to attend. We are grateful for the invitation from a friend who has MG and was attending. Having others who know what you are talking about and understand has been a great encouragement.

I began having MG symptoms when I was 5 years old. I was in and out of school a lot; gym class was very difficult. In 8th grade I had a tutor because I was too weak to go to school. Whenever I had tests, nothing showed up. I was finally diagnosed when I was 29. My sister had been diagnosed with MG, so I went to the same doctor, but didn’t tell her about my sister. It took 3 visits to this doctor to get a diagnosis. The Tensilon test was the key.

My faith is my greatest support. It has gotten me through a lot and helped me raise my five kids (all grown). I know I have MG – having faith and praying is better than dwelling on it. I downplay my MG to people who ask. You have to figure out how to live with it without getting down. You have to be positive each day that you’re going to be ok that day. My advice to MG patients is to get all the information you can. Learn how to plan your day; plan for rest.

I had always dreamed that my 40th year in life would be a great year of my history. My Grandma would be 80, my mother 60, my son 20 and my daughter would soon graduate high school at 18. Little did I know it would be marked in history with a diagnosis of MG and 2 weeks later surgery for a thymectomy. This diagnosis took 3 long years with a respected institution telling my family to find me a good psychiatrist when we got home.

Humor is my very best friend! It makes me bearable to me. No one wants to be around doom and gloom. If I humor myself, even in small ways, it seems to have an effect with everyone else too. A kind word, a little education, a little direction can change a whole course of direction in a struggling person’s life. My advice to MG patients is: 1) You need to be educated about your/this disease. 2) You are not like another Myasthenic. We are all different. 3) Listen closely to your body; it talks to you in many ways.

Unless otherwise stated, the information provided here is of a general nature, composed by non-medical personnel. It is meant to be accurate and helpful advice for MG patients. It is not intended to be medical opinion, nor is it a substitute for personal professional medical care.