(Delayed post. This event happened on Memorial Day. I have been hesitant to share, but feel it is so important for the ongoing research around Refractory Generalized Mysathenia Gravis aka Refractory gMG)
Yesterday, I was thrown a very hard learning curve and reality check.
Since I have been diagnosed, I have noticed that cooling my core body temperature during Mysathenia Gravis (MG) flares, immediately reduces exacerbated symptoms. The reason I knew to try a cooling vest, was because of my half marathon race, pre-diagnoses.
When I would run, I would start to find it difficult to swallow. Almost like my throat was swelling, but it really wasn’t. Therefore as I trained, I ran with instant breakable ice packs and 3 liters of ice water in a running backpack. It worked beautifully! I would place the ice packets on my throat and upper spine at miles 7, 9 and 11. It would greatly reduce the “swelling” and control the heat in that area.
Fast forward to diagnoses. We were told I was self treating without realizing what I was doing; not knowing I had MG. My doctors are AMAZED I did not die during the race. IT completely goes against everything about the disease. They are so proud of me. However, they told me not to do a half marathon again, haha!
Because of this information and my stubbornness, I was not going to let MG take everything away from me. I wanted start to find lifestyle changes that helped me keep a level of normalcy, as long as my disease would allow me to. How could I keep exercising, go on hikes, enjoy being outside and use the information I had learned from my half marathon and the ice?
As of September 4th, 2017, I am singing praises of this cooling vest! We had tried it off and on a round the house. But I never had to use it in what I felt was a true emergency.
Flexi Freeze paid for itself at 3:00pm on that Monday afternoon, when I had my first MG flare away from home with extreme symptoms that almost landed me in the hospital; potentially ending up on a ventilator.
Once EMS rushed my husband to retrieve the vest from our vehicle and strapped me in it, with in 10 mins, I was 80 % back to my “MG normal”. This was a game changer for me. The emergency personnel could not belive their eyes.
Here was this young lady, face showing all signs of a serious stroke ,unable to control her mouth and speech starting to slur, legs like jelly, both eyes almost completely closed; then 60 mins goes by and she is walking out the door with her husband to join her parents for dinner. No, that can’t be possible. It was for me!
Now, my ice vest is always by my side. I compare it to an epipen. It is there just incase. It even goes on the airplane with me! My doctors are amazed at the results this vest has provided me and the ability to potentially save my life. This does not work for all MG’ers, but it does for me!
All because I ran a race and told myself I wouldn’t give up! Who knew ice would come to the rescue just a few short months later?
My reality check was this is real and it is dangerous. Up until this point symptoms have been manageable. That is no longer the case and I will begin my new treatment in a week after preliminary blood work.