St. Louis, Missouri mwwmg@mywalkwithmg.org

Living With MG – Melinda’s Story

myasthenia gravis

myasthenia gravis I was diagnosed in March of 2014 but like many, I suspect I had it for longer. I knew I did have this unknown disease my whole life as active as I was. I loved working out, aerobics, weight training and even good old walking! So as far as I can pinpoint, I’d say I noticed symptoms approximately around 2009. I walked the steps every day to the 3rd floor but started to notice by legs burning. They just didn’t want to cooperate! Then, I noticed the fatigue in my arms. My arms would just get so fatigued from brushing my teeth, fixing my hair, washing my hair…pretty much anything with arms above my head was not good. I’m sure lots of you can definitely relate!

Then came the crushing fatigue. I would be sitting watching T.V. then just be passed out. I couldn’t stay awake. It wasn’t a normal tired it was a sick tired. Then, in the mornings even after a good night’s rest, I felt like I had been hit by a truck. Not even out of my bed and already starting the day off terribly! I felt like there was a 100 pound weight pulling me back into bed. Add a shower and I was completely exhausted. But as a single mom and had a job, I had no choice. At work I noticed, towards the end of the day, my words coming out weren’t clear, like I was slurring. I was like, what the heck! Then by the end of the evening, when I had to climb my dreaded steps for bed, oh my it was terrible. I literally had to pull myself up using the bannister! I dreaded going to bed!!! The routine, then going to sleep knowing I would still feel terrible in the morning.

So after awhile of feeling worse and worse, I decided I needed to get checked out. Thankfully, I have an amazing PCP who ordered every test in the world! It didn’t take her long to send me to a neuro. Once there, she ran some tests, did the dreaded EMG and the end result… you have a disease no one has heard of or can pronounce and there is no cure! FAN-TAS-TIC!!! My blood tests all came back negative so her diagnosis was based on my symptoms, my physical strength test and my positive EMG. She put me on Mestinon and a 2.5 mg of prednisone. I refused to take the steroids. I knew they were evil! I was on a super high dose of them years ago due to an asthma attack…absolutely horrid! So I took the Mestinon, a half every 3 to 4 hours. It definitely helped but noticed it started to wear off quicker then 3-4 hours. So after some trial and error I ended up on 6 halves a day, every 2 hours. I took it religiously to try and avoid the feeling of being hit by a truck! I never wanted that feeling to come back but unfortunately sometimes the mestinon wasn’t cutting it and I had good and bad days. I’d say the worst was getting out of bed, feeling worse after my shower and having to rest. Then the drive into work. There were days I’m sure I shouldn’t have been driving but I had no alternative. So off I went, exhausted, knowing if I had to react quickly, it wasn’t going to happen! Thankfully, God protected me and everyone else while I was on the road!

Although feeling a little with Mestinon, it still wasn’t enough and still too many down days. I struggled each and every day to appear to be “normal”! I was determined to find another way! I prayed A LOT!!! I asked for guidance and His healing. I started walking the parking lot at work for 10 minutes a day and now I’m up to 20-25 minutes, 5 days a week and sometimes I even walk after dinner. I find walking is the easiest on me. I even started light weightlifting for my arms. I started with 2 pound weights and stayed seated. I now use 3 pound weights 3x a week and STAND!!! Praise God for the small victories!!

In 2016, I saw another fellow MGer posting on Facebook about these amazing supplements she was on. So I watched her posts, even messaged her a few times and asked questions because I was still unsure. So I sat, watched the posts, and prayed to God that this could be the answer. About a year later, a high school friend came across my feed. I wasn’t Facebook friends with her at the time so I checked out her profile. Low and behold… she was on these same supplements! I was convinced, this is where God led me so I began my health journey. I started out very slow because I wanted to know how each product would affect me.

I am 2 years into this amazing journey and haven’t needed my Mestinon since September of 2018! I have amazing energy and I don’t have to plan my days around naps or breaks! Sure I still need a break or two if we have been out and about for a while but nothing like before. Even being on Mestinon, I have never felt as good as I do since these supplements. Trust me, MG does not let me forget it is still there but I know “it” is a lot weaker than it was before.

My message for you…Do Not Give Up Hope!! And pray!! There is help out there, you just need to find what works for you, whether it be prescriptions or supplements or prayer OR all three!! It may be a long road…but never forget… We are Warriors!!!

Much love to all! God Bless!

myasthenia gravis
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