The Added Stress of Finding a New Neurologist for MG

Since my husband’s recent fractured ankle and my pacemaker implantation and cardioversion, we have been staying at our youngest son’s home. He has been helping both of us with our medical and personal needs. Though I’ve since recovered, I’m still in a power chair and my husband has more healing to do before he can walk. We want to be in our own home and our own bed again, but we aren’t quite ready to go home.

Being away from home and the added stress

It’s been difficult for us to be away from our house. Our son and his family have been nothing but caring and supportive, but it isn’t our home. I have an adjustable bed that has an air mattress. It isn’t easy to go from a bed like that to any other bed. And it isn’t just that - I have caused our granddaughter to have to sleep in her little sister’s room when she visits. I feel bad I have literally taken over her room! It’s been stressful because I want to be home and have my own things around me.

I can tell that sometimes my myasthenia gravis (MG) acts up, probably as a result of my stress. Thankfully, the symptoms are very minor, but aggravating, such as blurred vision, my jaw tiring after a few minutes of chewing, and fatigue.

On the positive side, we get to see our youngest son every day. All 4 of our children have been extremely helpful throughout this ordeal. In fact, they’ve been awesome! One of our granddaughters works in a local hospital and she has taken the time to help us, as well.

A change in my insurance coverage

To add to all the other things going on in our life, I received a notice that my insurance was dropping my current medical center as a covered provider. In other words, the 2 could not come to an agreement to renew their contract, so anyone seeing a physician at this medical center would either have to change insurance companies or physicians. Also, why wasn’t this settled prior to the 2023 enrollment? Hmmm ...

This meant I had to decide if I wanted to stay with the neurologists I’ve been with almost since my MG diagnosis, or have a different insurance than my husband. It was a difficult decision. I liked how knowledgeable my neurologist was, but we’ve also been with this insurance carrier for a long time. I knew what they would cover and what they wouldn’t. I wondered if it would get confusing for us having different insurance carriers, and changing mid-stream wasn’t something I wanted to do.

Weighing my options

I weighed the distance I had to drive the medical center - it was a little over an hour from home, versus about half the time to find someone closer. I talked to my neurologist, and she said she could recommend some closer to where I live, so I decided to find a new neurologist. My prescription for my MG medication was up for renewal, so she offered to refill it for me so I wouldn’t run out in the meantime.

Time will tell if I made the correct decision, but hopefully I did. Once I get more information from her and do my research, I can finally reschedule my appointment. It’s really irritating that the medical center and my insurance couldn’t come to some agreement. It seems obvious to me; their thoughts are more on money than the patients this will adversely affect. That medical center sees all kinds of illnesses, such as cancer, neuromuscular diseases, and so much more. No one should have to go through anything like this.