Dr. Michael Monaco

I am blessed {and always have been} in so many ways that I cannot count them all. Having access to great medical care is one of those blessings. Quality health insurance through my employer allowed me to schedule annual checkups with first-class physicians. My primary care doctor is Dr. Michael Monaco who recognized that I had lost 8% muscle mass and some atrophy in my calf muscles. Doctor Monaco recommended that I see a rheumatologist. After an extensive examination, the rheumatologist recommended that I see a neurologist. This was happening when Covid (Feb & March 2020) was starting to become a public health issue.

By early July the diagnosis was ALS. I didn't like the way the pieces of the puzzle were coming together.
Wow… ALS is difficult to get your mind around (very difficult). My family and I came to grips (the best we could at the time} with the fact that I was diagnosed with ALS. However, Dr. Monaco told me (after all the tests and endless neurology appointments) he didn’t think that it was ALS; “I’d be very surprised if this turns out to be ALS”. He recommended that I check into the University of Kansas Medical Center to see what they thought might be going on and get a second opinion.

Another blessing in my life is the tremendous number of people that care about me. They surrounded me with their prayers and sent their positive “mojo”. Don't underestimate the power of prayer and the power of positive thinking. Of course, ALS was a devastating diagnosis. I was no longer able to process information the way I used to. I was mostly concerned about becoming a burden on the family and the extensive care I would require.

I enrolled into the ALS protocol at the University of Kansas Landon Center on Aging and started to prepare for the end of life. While I was there, I met the most fantastic people, Nurse Judy and Dr. Jawdat. They thought my rare disease may be something other than ALS. In fact, Dr. Jawdat said, “you don’t have ALS, I work with many ALS patients and you’re not one of them”. They performed another EMG and then a muscle biopsy. I had a new (and much better) diagnosis. #INCLUSIONBODYMYOSITIS (IBM). IBM is no picnic and not easy, but after the previous diagnosis i was relieved.