My Unexpected Insurance Company Ally

Myasthenia gravis (MG) can be scary when you are left by yourself to figure out what is going on. Knowing who to call when you think there is a problem feels overwhelming, and at the same time it also feels as if there is nobody to call. For me, this is one of the hardest parts of MG. Along with being unsure whether it's an emergency or just something that I need rest for.

Dedicated nurses

As soon as I got the diagnosis of seronegative MG, I started getting letters and phone calls from a company saying they were with my insurance company. They stated that they were there to help with the MG. It's a free program to go hand-in-hand with my insurance.

I was a little leery that the lady on the phone knew my entire health history. Who was she and how did she get that information? I discovered my insurance company actually hired this company that is made up of nurses to help patients manage their health conditions. Although there's only about 20 conditions that these nurses do help with, MG just happens to be one of them.

It is very comforting to know that if I have any questions or concerns about my MG, I have a place to call 24/7. While I do have a dedicated nurse, she is personally not available 24/7. But there are many nurses that work there and all my information is right at their fingertips. They are even hooked into my chart, so they have all my information, MG related and not.

Grateful for the support

My dedicated nurse calls every 3 months (whether I have called or not) just to check in and see how I am doing. I now look forward to having that phone call and hearing a friendly voice on the other end of the line. I know she's getting paid to talk to me, but my nurse is turning into somewhat of a friend. We both share things about our lives which makes the phone call a little more fun, and something other than just medical discussions all the time.

We also discuss if there's treatment that I believe I need, but the doctors won't listen to my concern. I just let the nurse know and they'll go to bat for me. Seriously, who's heard of an insurance company that hires nurses just to help their patients get the treatment that they need? This includes mental and emotional support. I appreciate just having somebody there at the drop of a hat when I need someone.

My gift from the insurance company

A couple weeks ago when I woke up, I was having some trouble breathing, my oxygen was running below 80. I tried my negative inspiratory force meter (NIF) meter - I was having a hard time getting to 25.

My single breath count was at 20 with major effort. By the time I got to 20, there was no sound coming out. I called the nurse and she could hear how difficult it was for me to breathe.

She had me do a single breath count which at this time I was 16. Obviously, she had me go to the emergency room. Because she had all of my information, she was able to get a hold of my primary care doctor, letting her know I was on my way in and what was going on. This was such a comfort! My husband is able to call also if he need help with my MG.