When Another Health Crisis Hits with MG
Last updated: August 2023
A few months ago, I had a medical emergency. My heart was failing and I was unable to function. Looking back at this particular event, my symptoms may have started almost a year prior, but I didn’t know.
It started with difficulty breathing
At first, I started developing difficulty breathing. As you know, myasthenia gravis (MG) can cause that symptom, as does asthma, heart disease, and a host of other ailments. Because I have myasthenia gravis and asthma, I thought my breathing issues were because of them.
Yes, I did see my primary care physician and neurologist for help and answers (this is a new neurologist since the one I had been going to for years retired). Neither seemed concerned nor did they even do the normal exams I’m used to with my visits. My rescue inhaler and nebulizer consistently improved my breathing, but the breathing issues went on for a year.
The doctor dismissed my concerns
Eventually, I began having more difficulty breathing. Neither the inhaler nor the nebulizer were able to help. As time went on, they seemed to help less and less. I made another appointment for my annual with my primary care physician to renew my prescriptions, and hopefully to get some relief and answers.
While there, I told her the difficulty breathing had gotten worse (I had told her about this more than once). She dismissed it and didn’t even do any kind of exam, nor listen to my heart or lungs!
I went home angry and continued to get worse, so made another appointment with her a few weeks later. This time, she at least listened to my chest, but told me she hadn’t heard any wheezing. If you have asthma, you know you don’t always have wheezing, but again I also have myasthenia gravis, which has to be taken into consideration any time I have new or prolonged symptoms.
I was sent on my way with an order for a chest X-ray. At least this time she told me to go to the emergency room if needed. WOW! Thank you, I wouldn’t have known to do that! By now I’m very upset and angry.
It was time to go to the emergency room
As my luck would have it, I woke up a few days later worse than ever! I was concerned I was having an MG crisis. I told my husband I couldn’t handle this struggle with breathing any longer and felt like I was dying. This time he had to be the caretaker and get me to the emergency room.
In the emergency room, I told my story to anyone that would listen and shared that I also have MG. However, as soon as they put me on the cardiac monitor, we found out I had a very slow heart rate that would dip down to the twenties or thirties. It’s a wonder I was still alive and kicking!
I needed a pacemaker and a cardioversion
After numerous tests, they determined I needed a pacemaker and a cardioversion. A cardioversion is done to put your heart back into a regular rhythm. Atrial fibrillation is an irregular heartbeat that occurs when the upper chambers of the heart, called the atria, beat irregularly. This can cause the heart to beat faster than normal. However, I had no pain, nor did I ever feel a flutter.1,2
I was finally admitted to the hospital, then to the critical care unit (CCU) for observation. I was scheduled for the pacemaker and cardioversion procedure. Because of MG, I was transferred to a larger hospital in Nashville. I had been confined to bedrest for a few days and my sciatic nerve was fired up - the ambulance ride to the other hospital was torture!
When we finally arrived to the hospital they ran more tests. The next day I met the doctor that was going to do the heart procedures on me. Because of MG, they decided to give me a general anesthetic rather than local. Any procedure can be life-threatening, let alone if you have MG and don’t inform all your health care providers. The way your care is handled may be different from the typical approach, from the type of drugs used for treatment to the anesthesia. It’s so important for us and our caretaker to remain vigilant no matter how ill we are.
My husbands injury
While I was in the CCU, my husband was getting ready to go home for the night after visiting me when he fell getting into the vehicle. He has been having health issues himself for about 4 years, so him falling was very bad for both of us. He broke his ankle and needed surgery. Because of our separate issues, we couldn’t be together to support each other or go to our own home to recover, either.
MG has to be front and center for any and all treatment we receive. We’re now at our son’s home. We are both recovering and have received awesome assistance from our children. I am seeing someone from home health and doing physical therapy so I can hopefully get my life back on track. It’s been quite a journey, but I’m much better now!
My most frustrating MG symptom is _____.