Four Words That Changed My Life

“You Have Myasthenia Gravis (MG) ” (Generalized) – April 19th, 2017

What is MG?   (Great Information on the Myasthenia Gravis Foundation of America Website)

I never thought it was humanly possible to feel so much pain, relief, confusion, anger and uncertainty in 15 seconds, as I did that day. I was completely flooded with emotion. I felt as if the room started to spin and I had no choice but to hang on for the ride.

Once my eyes went back into focus, from my state of disbelief, I was able to start having a long dialogue with my neurologist. I was very blessed to be paired with this particular doctor. He listened to me. He told my husband and I, this was a team effort and he would not settle for anything less than my happiness and well-being. But it was going to be a journey, not instant.

He looked us in the eyes and said,  ” There is no cure, however, we will find the best medicine for you. Everyone is different. But we have to dig our feet in and get through the worst before it gets better.”

“Worst ” did not necessarily mean symptoms, although that is also the case, but the  frustration to follow as one medicine after the next, really wasn’t working for me (IVIG DID work, but as most MG-ers know, it does not last). And my particular case was extremely confusing because we had to start figuring out what was MG and when would it be post-operative complications from my surgery, that in turn makes my MG worse. More on that in another post.

Needless to say, our lives have greatly changed as we have only been on this journey for about 2 months now. It has been a long list of doctors office visits, specialists appointments, testing…..more testing, hospital stays and infusion treatments.

I will never give up, I will never give in. It is not my upbringing or my personality.  I hope one day I can become a spokesperson in the MG community; encouraging others. As well as educating doctors, future medical professionals, friends and family, about Myasthenia Gravis and the importance of finding a cure.

#MGStrong #Live2Inspire1 #MyastheniaGravis #IHaveHeardOfMG

 

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