It is strange to think it was 2 years ago that I noticed such symptoms. It feels strange to think now that I am in some sort of remission. That I am stable. Remission for MG is not the same as Cancer. It does not mean that they have found no signs of it and that everything is “okay”, it merely means that you are stable. However, one of the first questions they ask you once you are formally diagnosed with MG is do you think that you ever showed signs of MG any time before this point?
When they asked me that 2 years ago I was like NO! Of course not! But I was also overwhelmed by the diagnoses and the sheer amount of information that was being pumped into my brain in a short amount of time of things that I should start thinking about doing. It was not that I did not take any of it seriously, it was just that I did not understand how serious this disorder was at the time because the symptoms had not gotten nearly that bad yet. I had not even heard of it before that week and really had not had time to research it and there was limited information online. Moreover, everyone’s experiences are different so I was not sure how much I would experience and how severely.
However, when I think about how long it usually takes to diagnose someone with MG (1-2 years) I think about why that is. They have random episodes of weakness or symptoms that are inexplicable and then they seem to go away. I had that happen several times in the years leading up to my diagnosis but as a wellness professional I worked through them and trained my way around them thinking I was either over training or not developed enough to handle new regimens I had put myself into and and needed more specialized training. I had my hip flexors ‘die’ on me one year just before I got Pilates certified after getting cycle certified. I went to get Pilates certified and while in training I laughed it off but I went to do a double leg lift and my legs just sank like bricks were tied to them. I could not understand it I had done this move a million times in classes I taught before this point for abdominal/ core classes. I kept trying to to no avail. I tried a pilates double leg circle as well, nothing. I tried with one leg I was better but shaking uncontrollably like one of the newbies in the class. So I pretended I had never taught class a day in my life that day. That was the only way I could get through that class without feeling embarrassed. I would act like a newbie as if I was shocked at how much work it took to put into a core class and Pilates though I was use to taking and doing this all the time and suddenly I could not do 90% of it. Maybe it was the combination of teaching the new cycle classes, kickbox, bootcamp, and now trying to add this in???
The overuse and repetition likely did me in. I assumed I was under-developed and needed to make adjustments and push through and my elite category 2 cyclist Boss taught me how to ‘cheat’ while teaching indoor cycle by opening my hip flexor up a bit more in raising my seat a notch or 2 and bringing my seat more aft (forward) until my hip flexor recovered as he was dealing with a similar issue (or so we thought at that time).
I also managed to have random ‘breathing attacks’ that my doctors never fully wanted to call asthma but bronchial issues over the years as well. I had one so bad with the onset of an argument with my mom that I had to go to the hospital and had lost my voice…Not from yelling or anything but from breathing or lack there of. I was also quite weak.
I am most glad that I was not diagnosed back then though because even now I get doctors who ask me what myasthenia gravis is. Even though it is becoming more prevalent and society is becoming more aware to be diagnosed even even 10 years ago with this in my area surely would have been a death sentence as the doctors have used me as their guinea pig for many things asking me if it was okay that I was the first for this or that. I always say yes because anything to help others have an easier time and get better research means more awareness and possibly a faster road to new medications and a cure.
I am hopeful and happy about what the future holds. I know better things await!