My Inclusion Body Myositis

by | Mar 9, 2023 | Blog, Patient stories|Rare disease world

This week’s blog is written by John Muller, Founder of John shares his experience of being diagnosed with inclusion body myositis after being misdiagnosed with ALS. He shares how he’s approaching life with body myositis (IBM disease) below.

My journey started a few years before I even realized it. I noticed I was a little slower and weaker than I had been in the past (sometime in 2011-2012) but chalked it up to growing older. It wasn’t a problem, well… it wasn’t a problem until it was a problem. It became difficult to climb stairs and play my guitar. Travel was difficult, my hands were cramping, and I was fatigued. I figured I had lost a step because of my age and most of the people around me were a little younger, so no big deal.

Daily tasks became more difficult. Taking a walk would hurt my knees and sciatica. Lifting a box that weighed 20 or 30 pounds made it hard for me to keep my balance, and I always needed a handrail going up or down stairs. I seriously didn’t consider a disease of any kind. I probably needed to change my diet, lose a little weight, and maybe some exercise.

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 recognized that I had lost 8% muscle mass and some atrophy in my calf muscles. He 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, my primary care doctor 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 downer diagnosis. I was no longer able to process information the way I used to. I was mostly concerned about becoming a burden and the extensive care I would require.

I enrolled into the ALS protocol at the University of Kansas Landon Center on Aging to prepare for the end of life. While I was there, I met the most fantastic people. They thought my disease may be something other than ALS. In fact, one 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. Inclusion Body Myositis (IBM)! 

There’s much more to this journey, as I was just getting started and finding my way through a rare disease. I’m not complaining about being diagnosed with IBM, in fact it’s another blessing. There is no cure for IBM and there are no effective treatments. IBM muscles continue to waste away until you are completely immobile, little at a time you lose muscle function. There is little information available about inclusion body myositis. The information that is available is limited to just a few bullet points that have been reissued in different formats repeatedly for the last 20 years. There are many great organizations (both for profit, nonprofit, and medical research facilities) around the world working hard to make a difference in the lives of myositis patients.

Lucky for me I was at the University of Kansas Medical Center. I must have been in the “sweet spot” to be a research candidate because I was asked if I wanted to participate in an FDA study. Of course, I thought that was a great idea. Unfortunately, it was at the peak of Covid, and things were delayed. I was accepted into the study and I’m very much looking forward to positive results. Regardless of the outcome I feel as though I’m doing something, I am seeking positive results for myself but also to further the research.

This began a new phase in my life as I started short term and then long-term disability through my employer. I signed up for Medicare, social security, and now I’m retired. I had planned for retirement one day soon but hadn’t planned to retire in the manner that I did. Even with this disease it still took many months for me to really stop thinking about work. I’d guess that’s common for everybody at retirement, but I felt as though there were things “left hanging”. I worked with an amazing family-owned company at various capacities for many years. They could not have been more helpful with the transition. Everything went so smoothly with phenomenal support from every level at the company. As well as my employer I couldn’t have made the transition without my family and friends. As I noted earlier; I am Blessed!

Now with everything in place and lots of free time (but low on energy) I was ready to do something to support patients and find treatments (and perhaps a cure) for inclusion body myositis.

I am driven to give back somehow now that I have more time. I have slowly declined over the last 18 months. I think I can make a small difference for people with no treatments, no cure, and very few options. It took me almost a year to find a direction and I started a nonprofit to support research.

GettingUp.Org, Inc. was formed to advocate for patients and support neuromuscular medical research, specifically inclusion body myositis.

This “rare disease” isn’t really that rare, there are about 7,000 diseases with no treatments. Many of these diseases are connected in one way or another. Perhaps a treatment discovered for one rare disease may have positive effects on other rare diseases.

There are amazing advancements being made everyday in medicine but most of the research money is being spent on more profitable and more common diseases. Since many millions of people suffer from heart disease and various cancers, hundreds of millions are spent there.

Not much is spent (comparatively) on rare diseases; there are so many needs in our society like homelessness, affordable housing, food insecurity, clean water, education, etc. etc.

IBM is thought to be an autoimmune disease, but nobody is sure. Although there are places around the world that study myositis the advancements have been slow.

As mentioned above; to help bring attention to this insidious disease and help fund research I started an organization GettingUp.Org. I established the corporation, filed for nonprofit status, set up the website ( and was up and running by October 1st, 2022. See this site if you’re interested in helping, there are many ways to support IBM at GettingUp.Org.

We appreciate your support. We have a fun event scheduled this year in June. Save the date (June 25th & 26th) and golf with us and do some good. See the website for details and sponsorship opportunities.

Join us at the beautiful Lakewood Oaks Country Club

John Muller, Founder
GettingUp.Org, Inc.