Life With MG After a Pacemaker and Cardioversion
Last updated: September 2023
To say my life is different after having a pacemaker is an understatement! Many symptoms of heart failure can mimic myasthenia gravis (MG) symptoms, hypothyroidism, and asthma - so I’m always asking myself, "which one is it?"
Until recently, I’ve had shortness of breath when sleeping or during activity. I was also experiencing this for the last several months, so I don’t know when the breathing issues or the heart issues started.
Shortness of breath
I had been to a couple doctors and had mentioned the shortness of breath. Most of the time, they just blew it off, including the new neurologist I had inherited. It seemed no one was interested or concerned.
In fact, I went to my primary care physician twice in one month and told her I had shortness of breath. The first time, she didn’t even check my vital signs, listen to my chest, or check my heart rate or quality. The second time, she listened to my chest and told me I wasn’t wheezing, so it wasn’t my asthma. Two days later, I was in the emergency room.
I had such a slow heart rate - why didn’t she notice it when I went to see her? Why did she blow me off? That said, I’m thankful for the various medical teams at both hospitals. They were passionate and checked on me often.
My recovery after a pacemaker
Now that I’m home and recovered, the shortness of breath is still there, but much improved. While recovering, our daughter and the cardiologist/electrophysiologist decided I needed physical therapy. They were under the impression I stayed in my power chair all day and never tried to walk. Imagine the physical therapist's surprise when I used my walker and made 2 trips around the house and did 3 half squats.
Even though I have weakness in my legs, I can still exercise, but I did get tired easily, similar to before the pacemaker. I didn’t need physical therapy as much as they thought, plus it caused increased back and leg pain.
Telling the difference between symptoms
Before my pacemaker, I had so much shortness of breath, whether I was trying to walk, exercise, or even sleep. There were many times it would wake me up. So, what was causing this? Was it asthma, heart symptoms, or MG? How do I tell which it is so I know what to do? This dilemma is worse than before because now I have yet another issue to deal with.
I mentioned this to the cardiologist during my pacemaker check visit. He didn’t seem concerned about it. He also told me my atrial fibrillation returned, which can causes the same symptoms, but he explained that I had compensated for it and could live with it with no problem.
Slowly feeling better
Now, the shortness of breath has improved. I still tire quickly and my legs are still weak. Although I don’t know what’s causing it, I think it’s MG. I still try to exercise and get up as much as possible so my legs don’t lose their muscle tone and cause me to be more dependent on my power chair.
They do seem to be improving now, too. It’s all been a very slow process, but I think I’m getting there. However, being able to tell which disease is causing what is still a mystery to me.
I’m much better lately and have been helping my son and family with the housework and cooking. It actually is helping me with my emotions and attitude, too. I’m so tired of being in the house all the time, I’m looking forward to when my husband heals and we can start living again. As long as the MG and my other issues stay in the background, I’m good!
My most frustrating MG symptom is _____.