My story
I am 65 years old. I was diagnosed with Myasthenia Gravis almost 3 years ago. It started 3 years ago with double vision. I didn’t know until 4 months later the cause of the double vision. I was having double vision, but one day, all of a sudden, I had no control of my tongue or jaw muscles. I couldn’t eat or talk. I was taken to the hospital, assuming a stroke. It wasn’t a stroke. I spent 7 nights in the hospital getting this under control, with one of the days at the hospital with Myasthenia Crisis, not being able to breathe. Fortunately, I didn’t require a respirator. I had never heard of this disease, so I was completely in the dark.
Symptoms that weren’t the greatest;
Weak eyelids – when taking a shower, eyelashes turn into the eyes, which was painful. Lips had no strength – couldn’t suck a straw. Couldn’t spit. Had no strength to chew, could not use my tongue. Could not talk normal. When eating or drinking, had to have hand on my mouth to keep it shut. No strength in my neck, couldn’t hold up my head. Neck brace did not help. Very painful shin splints in both legs. Very painful leg/foot cramps
Very painful cramps in my hands, making them go in all directions becoming very arthritic
Sweaty hands and feet (My feet still sweat a lot sometimes)
*With cutting down Mestinon, no bad cramps. Still arthritic hands, fingers.
When first started taking Mestinon, a lot of diarrheas, loose stools
Sudden urges to use toilet, little or no warning
*With cutting down on Mestinon, no longer a problem
Emotions took over and I became easily upset, wanting to just start crying for no reason. Almost involuntarily, it would just happen and I had a hard time stopping it and controlling it.
Since then, after all the tests, IVIG treatments, drug therapies, having a (contained - cancerous) Thymectomy, I was forced to retire since I can no longer work. I still take Prednisone every day, not a big fan, since I gained 25+ pounds in a short time after starting this.
I still continue to have IVIG therapy every 5 weeks. I was doing 4 weeks, but recently tried 5 weeks without too much difference in how I feel. I tried 6 weeks, but can’t do that yet. Since this has started, I have had 64 IVIG treatments in almost 3 years. With medication, I don’t have most of the above problems. I still get fatigued easily, and have shortness of breath. I can’t talk a whole sentence without taking a breath halfway through. My eyes still water a lot. It still frustrates me that I can’t do everything that I used to be able to do, but have learned to deal with it. It just takes me a lot longer to do anything now, taking frequent breaks to get back my energy to continue. Winter is not a fan of Myasthenia, making my muscles and nerves weaker, giving my arthritis a field day most of the time.
When I started this, my neurologist told me that I would look normal to everybody on the outside, but I wouldn’t be. I didn’t know what he was talking about. Now I do. I look fine on the outside, but the inside is a whole different story that people can’t see.
I refuse to let my diagnosis depress me. I know God has been with me all the way. He has watched over me for 65 years, I don’t expect Him to stop now.
Dan, my wholehearted appreciation for opening up about your story for others to read. My MG journey also began with double vision and is very similar to yours. I just handled the double vision thinking it was strange. A month later, while eating, I started slurring my words, face started drooping on one side only, so they were running all the tests for a stroke.
How frustrating were those 4 months of not having answers? How long was it until more symptoms than the double vision began to surface?
Receiving answers must have been a relief, but what was the challenge of accepting you now have a chronic disease?
I've also dealt with the frustration from medication side effects leading to unanticipated and unwarranted crying from nearly anything, leading to strained relationships.
Compassion to you that had to halt your career on short notice. I hope the change contributes to a better quality of life for you having time and energy to dedicate to yourself. In the meantime, does it look like you are to remain on the Prednisone at the same dose?
I hear you about "looking normal." After my transsternal thymectomy, I tend to try to have the scar somewhat visible, so people don't give me a hard time or stares for accommodating my otherwise invisible illness!
I am so glad you still keep your head high! Let's look forward to some warmer weather! - Jodi, Myasthenia-Gravis Team Member
Thank you for writing back.
I had been to my eye doctor for double vision. Since Myasthenia isn't well known to a lot of medical personnel, they just made my glasses with a stronger prism. This was short lived and didn't work for very long until it got worse again. After being diagnosed, my vision returned and I could go back to my old glasses.
We live in New York and were on our first day of vacation, on our way to the Outer Banks in North Carolina. We got to my daughter's in Richmond, Va when all this started. She took me to a stroke hospital as soon as we got to her house. The ER was full, but they put me ahead of everyone there, thinking I was having a stroke. 3 nights in the hospital there. They let me go on to the Outer Banks. I lasted 2 nights and was having trouble breathing and was sent by ambulance back to Chesapeake Va to the hospital for 4 more nights. They finally let me go home. So much for vacation.
Knowing nothing about the disease, I fully expected to go back to work after my Thymectomy.
Prednisone remains at 20MG for the unforeseeable future. (Started at 30MG). IVIG treatments also remain for the unforeseeable future. I will take CellCept (Mycophenolate) for the rest of my life.
As I said, winter is not a fan. It is hard on my arthritis being worse from the Myasthenia. My wife recently retired, so we are planning on moving closer to our daughter this year, somewhere in Virginia where the weather isn't as bad as New York. I have learned to thank God for every day He gives me, good or bad.
