Life as a Military Spouse Living with MG

Shortly after my myasthenia gravis diagnosis in 1995, I married my college sweetheart who was an Ensign in the US Navy. I remember being so concerned that I wouldn’t be able to walk down the aisle or say my vows clearly. This was many years before online groups and sites like this one to help me to know what to expect.

Thankfully, I was strong and healthy on that beautiful November morning and we all enjoyed the day more than we ever thought possible. The day after our wedding, I said goodbye to my family and friends and I moved 2,000 miles away to live with my new husband, make all new friends, navigate the military health system and basically learn to be a military spouse.

It was a bit overwhelming (to say the least) for a young 22 year old, recently diagnosed with a serious illness! Thankfully, we had strong support from our families and friends from our hometowns and from college.

Finding new doctors

My biggest concern at the time was how to find all new doctors, continue with the medications I was taking and ensure that there was a hospital close by in case I needed plasma exchange. I was taking ephedrine (which is no longer available due to the methamphetamine crisis), Prednisone and being treated with PLEX when I was heading down the path to a serious flare.

Everytime we moved, the first thing I did was to establish care with a primary care physician at the local base hospital or in town if there was no hospital at that station. Back then, I used my primary care as my first point of contact as there wasn’t always an experienced neurologist in the local areas we lived in (some were quite rural). This didn’t always serve me well. I was hospitalized multiple times in the 4 years that my husband was in the Navy.

Continuity of care

Following the Navy, we moved closer to home where I was hospitalized with a crisis in Boston. Believe it or not, this ended up being one of the best things that ever happened to me over my myasthenic journey.

In Boston, I met an amazing, brilliant, neurologist. We altered my medications and when my husband was hired by the New Hampshire Air National Guard and I knew there were multiple moves coming up in our future, I asked him to remain as my neurologist in charge.

As we moved around for the next several years, I would make contact with a primary care physician and find a neurologist in the area (if there was one). The key to the continuity of my care was that the doctor from Boston was calling all the shots. We would talk on the phone every 3 months or so and decide if I needed any medications added, subtracted, etc. I would then have my local doctors contact him and they would prescribe whatever I needed locally or semi-locally. Sometimes this meant driving 3+ hours each way for IVIg or plasma exchange.

Virtual appointments

The beauty of the National Guard is that once you are fully trained, you normally don’t continue to move from base to base regardless of your active duty status. We have now been in New Hampshire for over 20 years. We recently moved up to a remote town in the White Mountains.

While I am no longer with that talented neurologist, I now have a new team that helps me to manage my treatment remotely and I am treated locally if I have an emergency situation, but I am transferred to Boston in the event of a crisis. The availability of Zoom and patient portals has helped tremendously with staying in touch with my doctors and helping to keep everyone on the same page!