Is There Hope with Myasthenia Gravis?

For the years leading up to this myasthenia gravis (MG) flare, I worked 40 to 60 hours or more a week. I was going full steam every day. I'm not one to just sit around. But, the last 3 years I have sat at home trying to work when I can. However, without proper treatment it's been a long road of trying to get anything done.

I have seronegative MG. I have the exact same symptoms as seropositive MG. For the most part, people with seronegative also receive the same treatments and medications. But as with everything in MG, we are all different. It can be difficult to get a diagnosis with seronegative MG, especially if you have negative results in a single-fiber electromyography or repetitive nerve stimulation like I did.¹

The specialist confirmed my diagnosis

Earlier this month I traveled out of state to go see an MG specialist. My husband and I were both overwhelmed when, without hesitation, the doctor immediately confirmed a diagnosis of seronegative generalized myasthenia gravis. He also said my previous doctors should have figured it out years ago just based on my obvious symptoms alone (not that we didn't already know this). After what I've been through with doctors over the last 40 years, it was validating to hear this.

Overwhelming hope

I started thinking about how I have only been on about half of the treatments this new specialist wants me to try. What will I be like in a few months after doubling my dose of CellCept or potentially starting IVIG? The overwhelming hope I had today!

I was looking through "help wanted" ads online for a friend who needs work, when I spied a job that I would really have liked to apply for. I have all the qualifications, with the exception of being able to maintain 40 hours a week, plus the commute. But then I thought, well in a few months with more treatment, better treatment, it really could be a possibility!

So, I continued to look and dream. I thought about all the people with MG who are still able to work, or at least be active in some way, because their treatment is working for them. That just gave me more hope!

Time will tell

As I sat pondering the possibilities, I realized that only time will tell and I reminded myself to relax. Before my diagnosis of seronegative generalized myasthenia gravis, I did go into a full remission for 10 years. This was before I was ever on treatment. Knowing this also brings me comfort.

At that time, my flare was so bad that they were preparing to put me in a nursing home for the rest of my life as I was pretty much bedridden. They let me know that they didn't think I would be there long, to get my affairs in order, and to be prepared. That was 18 years ago!