My Turn: Mitch Shaver

My name is Mitch Shaver. I’m 45 years of age with a beautiful wife, Rhonda, and two amazing children. Rhonda and I will be celebrating our 19th wedding anniversary this fall. Our son, Merick is 16 and a junior in high school.  Our daughter Mariah is 15 and a sophomore.

My first symptom noticed was on a business trip in September, 2017. I was out having dinner and drinks and later back at the hotel, my colleagues commented on how drunk I was because my speech was slurred. But I remember thinking, “I’m not drunk, you are!”, but I couldn’t get my words out correctly. In the next month I noticed I couldn’t open plastic bottles or baggies with my left hand. Then I developed a hyper gag reflex and fasciculation’s that ran rampant through my left arm and left shoulder.

Now Rhonda and I are therapists. Rhonda is an occupational therapist and I’m a physical therapist. Working in the medical field armed us with a little bit of knowledge. We started to make list of possibilities…cervical radiculopathy or maybe a stroke. On October 31, after trick or treating, I told my best friend I could have a brain tumor. After a little bit more research, we realized there was a really good possibility I had ALS.

Like most people, we made an appointment with our primary care physician. We sat in front of her, explained the symptoms and told her we believed I possibly had ALS. I was amazed at her response. She responded, “You don’t have ALS. There is nothing wrong with your legs.” She referred us to the emergency room. At the emergency room we explained the last few months of symptoms and the progressions. They ran an EKG, blood pressure, blood work, CAT SCAN, and urinalysis. To my amazement, the ER doctor continually asked if I had taken any drugs. Because he explained all of my tests were negative and he could not hear any speech change. (How would he have known if my speech changed with only knowing me 20 minutes earlier). My next trip was to the neurologist with a battery of tests to include EKG, XRAYS, MRI, bloodwork, physical exam and reflexes. The neurologist explained it was unlikely ALS, but more likely a host of other neurological conditions: MS, cervical radiculopathy, MMN and others. The next trip was an EMG with needle placement all over my body (legs, butt, arms, tongue, etc.) to see how my nerves were reacting.

Instead of following up with the neurologist, we did more research and pushed to see an ALS specialist. We sat with Dr. Newman on January 30, 2018. He examined me, tested my reflexes, looked at my fasciculation, reviewed all my test results and confirmed our suspicion of ALS.

The first symptoms I noticed in September to the diagnosis of ALS in January took only four months. This was unusual. Most stories I have read, people get referred back and forth to orthopedic surgeons, a neurologist, pulmonologist, infectious disease physician and go for years without having a diagnosis.

The average life of someone with ALS is two to five years. It is unfortunate the medical community’s lack of knowledge of ALS. Waiting a year or two to understand your severity or treatment of ALS could waste precious time one has left.

I am fortunate that Rhonda and I had enough background to research my condition and lucky that I am stubborn enough to forge my path. No matter what your aliments are, research, advocate for knowledge in your treatment, and remember to live each day.

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