They say stress can trigger MG and I really believe mine was triggered by stress. Around the time that I started getting symptoms my grandfather passed away and I was there to witness it which was very devastating to me, it took me a couple years to get over it. I also was going through a recent breakup from my "high school sweet heart" whom I was together with for 5 years prior, my family was losing their home and moving into an apartment, I was very homesick sine I was first generation college student and I was on academic probation due to my GPA. So you could say I was a bit stressed out!
I was diagnosed in 2009. My sophomore year in college. My symptoms started with my eyes, I couldn't close them all the way sometimes (I noticed it more while in the shower) and then my smile (sometimes I couldn't smile or pucker my lips). I didn't go to the doctor right away because I thought it was just lack of sleep and stress. Finally I was having trouble talking, chewing and swallowing. It felt as if my tongue was swollen and I could not talk at all. And to make it worse I was taking a speech class during that time, but luckily had a very understanding professor that let me do my speeches in private (the best that I could).
After seeing multiple doctors for about two weeks, (a primary care, an ENT and another specialist) I was finally refereed to a hospital because they were worried that my breathing could be affected, there is where I met my first neurologist that conducted multiple upon multiple tests which all pointed to Myasthenia Gravis. The most devastating part for me was not having this odd auto-immune disease that I have never heard of, but that I had to drop a semester of college to get treatment and surgery. I tried to do everything I could to not have to drop a semester but my family finally talked some sense into me and made me realize that if I am not well I will not do well in school.
I started Prednisone right away, (this horrible steroid that works but does horrific things to the body) then had four Plasmapheresis treatments (pretty much had my blood cleaned). After the plasmapheresis I felt like I could run a marathon, I felt great and was hoping I didn't have to have surgery but of course that was not the case! Due to the line from the plasmapheresis I developed a blood clot on the right side of my neck where the line was, so had to be on blood thinning injections for about three weeks (thankfully my mom and aunt are nurses!). On December 7, 2009 (the day after my birthday) I had a Thymectomy. Everything went very well, they said my thymus glad was very large and that we wouldn't know if the surgery worked until two years have passed.
Since the surgery I have been on this never ending roller coaster of getting better and worse and lowering and upping my medication dose. I started IVIg treatment in 2011 because my prednisone dose had to be upped due to getting symptoms of weakness in my face and hands again. I would get treatment every 4 weeks and eventually got to every 6 weeks. I went back to every 3 weeks in 2012 due to insurance thinking I wanted treatment in two locations and had me without treatment for two months (I just wanted treatment closer to my school, instead of driving 3 hours!). During those two months of no treatment I got worse, my legs got weak and I fell about three times. I started physical therapy for a few months to try and get more strength in my legs. I also have been told that due to the medications I am taking my hips and lower spine are starting to be affected.
I have tried multiple things to try and control this confusing disorder, I have tried different eating habits, exercise habits, and sleeping habits but as soon as I feel better I end up getting worse. It is very frustrating.
Currently I have graduated from Illinois State University with a Bachelors in Science, Major in Psychology and Minor in Sociology in May 2013. It took me a year more but I have also struggled with a lot more than most, but I did it! I moved to Texas with my boyfriend (who is very supportive/understanding with helping me with my MG and anything else I need, along with my very supportive/understanding family) and am currently a Pre-K teaching assistant.
The surgery did work, I have not had any symptoms involving chewing, swallowing or talking! But my new symptoms are my hands, legs, arms, facial features, and occasionally double vision.
I am doing IVIg every 4 weeks, taking 25mg of prednisone daily (reducing every 4 weeks), taking Mestinon and mestinon-timespan as needed and also taking a multivitamin, calcium, and vitamin D. I try to stay active but this Texas heat is too much for me right now! I also try to stay positive and not let things stress me out! I am currently working on trying to do a "clean eating" diet that I found on this great website eattobeatmyastheniagravis.com but I have tweaked it a little to personalize it for myself. I am starting with trying to not eat red meat and to eat just fruits and veggies when possible. I am hoping to be able to lose weight and lower prednisone, I have gained 40 lbs since I have had this diagnosis.
My goal for this blog is to inform and spread awareness of Myasthenia Gravis, to help others with MG, and to be able to control my MG and motivate others to find a way to control theirs. It took me almost 3 years to be able to actually "accept" that I have MG and be able to talk about it with others. I am not a professional writer but I do enjoy writing. I will try to post as often as I can. I love pictures and I love quotes, so I am sure you will see both on my blog regularly.
