My MG Wishlist

If you have myasthenia gravis (MG), you know how much stuff you miss out on in life. Although I have heard of a few people who have gone on to live fairly normal lives with MG, this is not the case for many of us (including me).

So, this is my MG wish list. Feel free to add to it - I am just one person and can only speak to my experience.

Easier diagnosis

I wish that the medical community around the world would come up with a set of parameters to make getting diagnosed easier. I wish there was blood testing for all known antibodies each and every time, not just certain labs, and that we could add on to those antibodies each time a new one is discovered.

More MG specialists

I wish there were MG specialists available in all countries and states! I wish these specialists would collaborate with all the other specialists so that there was consistency in care matter where you went. The qualifications for getting proper and timely diagnosis and treatment would be the same.

I personally do not believe MG is as rare we think - it is just difficult to diagnose.

Better training

While I know many people do test positive for MG using electrical studies, like single-fiber electromyography or repetitive nerve stimulation, not everyone does. Along with blood testing, I wish anyone administering electrical studies knows exactly how to perform the study, e.g. what muscles to focus on, what frequency, etc.

I wish anyone who treats MG is required to do yearly continuing education about the condition. A true MG expert should deal with the condition on a daily basis and should have an up-to-date working knowledge. In my experience, 99 percent of the doctors I saw while trying to diagnosis and treat my MG did not meet this criteria! Including the so called "MG Specialist."

I wish we were heard by the medical community

The true MG experts are those of us who live with it. I wish that we were heard by the medical community as we are the experts of our own bodies. Not everyone with MG has all the same symptoms or textbook symptoms.

Also, I wish some doctors wouldn't dismiss symptoms by saying things like, "there is no muscle pain, bladder and/or bowel problems or heart issues with MG." There are so many things a person can experience due to MG that someone else with MG just might not experience at all.  After all it is called the snowflake disease for a reason!