When I look back at the details of getting diagnosed with Myasthenia Gravis (MG), God fingerprints show up rather quickly. I didn’t realize how fortunate I was to come upon the diagnosis until I “researched” my disease on my own through Google. Many people with MG spend years going to doctors trying to figure out the unexplained weakness and fatigue. They begin to question their sanity as their symptoms come and go throughout the days, months, and even years. So showing my first symptom and being diagnosed within one week is a pretty rare occurrence.
It was February of 2016. It started with a pack of fruit snacks, oddly enough, while chewing them my lips felt “weird”. I walked over to the mirror and started to move my mouth around. I attempted a smile and found that the right side of my mouth wouldn’t move up. Stepping out the side door to the garage, I showed my husband. He confirmed the oddity and that was the end of it. A few minutes later all seemed back to normal. Later that day I went to a friend’s house for a home party, while eating the refreshments I could feel it happening again. I showed others there to confirm that I wasn’t crazy. They all agreed and it was decided that I should see someone. My first stop was the dentist. I had dealt with clenching in the past and had an idea that perhaps it was happening again and this was the repercussion. After a thorough exam the conclusion was that it was not dental related.
My next step was to see my family doctor. He diagnosed me with a mild case of Bell’s Palsy and started me on a brief round of Prednisone. After a couple of days I realized that it was not getting any better, in fact, it started to get worse. It became difficult to speak and one day while trying to use the computer my right hand stopped working all together. In panic I called the office and they immediately set me up with a visit to the neurologist. Due to a snow storm in the area there were multiple cancellations that day, which is why I could even get in. Had the weather not been an issue I would have had to wait six weeks to see him.
While talking with the neurologist it became apparent that I was actually exhibiting multiple symptoms. I had just started a new exercise regimen and had blamed my overall weakness and fatigue on the fact that I was just that out of shape. I was struggling with lifting my 7 month old daughter, I had to physically lift one leg over the other to cross while sitting down, I couldn’t do a push up, a burpee, or a sit up without extreme concentration. And I was having a difficult time holding in urine…I blamed this on the fact that I had four kids.
The neurologist order blood work and sent me over to the hospital lab immediately. He ordered an MRI for the following day. When I appeared back in his office after a few days I was handed a packet of paper with the words “Myasthenia Gravis” written at the top. The blood work is was actually identified this illness. The MRI was used to rule out the possibility of MS.
And there you have it. A diagnosis of a chronic illness that will affect me for the rest of my life. A life long prescription to help manage the symptoms. A pack of paper that explained in detail what was happening inside my body.
It took a few days for the realization to actually kick in. I had found groups on Facebook and joined these communities. They were nothing short of depressing. I was finding myself in tears each day as I contemplated what my life could look like 5, 10, 15 years down the road. Was I going to need more than just this simple medicine? What I going to have a myasthenia crisis? Was I going to need infusions monthly? What I going to need a wheelchair? As the weeks and months passed my regimen seemed to be keeping me extremely stable and “normal”. I was functioning as I always had. I removed myself for the FB groups; I didn’t need that negativity in my life. I was happy and healthy.
2017 went by with absolutely no issues. My neurologist only saw me once for an annual checkup. It wasn’t until March of 2018 that things started to go downhill. I began noticing that my medicine was no longer working as well. By April my vision was becoming blurred and at times I saw double. By May my fatigue overwhelmed me most days. At the end of May I was in the hospital due to breathing difficulties. June was a month of IVIG (infusions) and July is now seemingly better but I’m still not functioning 100%. My hands don’t always work properly; I have paralysis in my pinkies and ring fingers after too much use. My eyes don’t always see clearly, and I have a tendency to need a nap daily.
At the end of July I will be heading to Rochester, MN to visit Mayo Clinic. We are hoping for a more comprehensive plan to get this flare under control.
***This post will be updated as needed to stay relevant.
Desiring Today 