May is Myositis Awareness Month - I have IBM, Inclusion Body Myositis

 Well Hello!  

It's been a LONG time.  

I've had a CRAZY life since last post on January 24.  

I have been actively seeking the "why" to my weakness for many years.  Every "ist" (specialist) treats the condition I am sent to see them for.  No one connected the dots, even though I kept saying..."isn't it weird that..." 

So in December 2023 I had a complete workup by the neurologist in Wausau, WI.  MRI, EMG and multiple examinations.  I was told, I did not have MS or Parkinson's, that we would monitor it and come back in a year.  

When I returned in December 2024, I told him that I had a couple falls this past year.  One resulted in fractures to my ankle bone.  He examined me and noticed additional weakness so another EMG was ordered.  If you have never had an EMG, but have touched an electric fence, that is what part of it feels like.  The other part is needles poked in your muscles.  It's not my favorite.  Anyway, he says, I will be right back, I think I know what is wrong with you.  Here, silly me thought, Yay!  Finally!  He comes back in with a referral to UW Madison specialists and says "I believe you have a motor neuron disease, possibly ALS, but it could be another disease, they will test you and find out.  However, the waiting list is like 1-3 months."  

WOW, right!  You can imagine all the "things" running through my mind and what I was looking up online.  After a month of not hearing and worrying, I called UW Madison and was told 4-6 month waiting list.  So, I listened to my family and contacted Mayo Clinic in Rochester, MN.  I heard back in 2 days and had an appointment within 2 weeks.

I won't lie, it was tough, all the emotions, giving things away, starting to say my good byes, making life ending plans I was just broken.  It looked like ALS - according to Google.

When we arrived at Mayo, the first neurologist asked "what can we do for you?"  I said "I want my 'Mayo Miracle' and you to tell me I don't have ALS."  After MANY examinations, tests, over the next 4 days, they were able to tell me that I probably had IBM.  Now the only reason I remembered that acronym was the BM part (poop) because I BM is a poopy disease.  I had to return in 2 weeks for a muscle biopsy and several visits with other departments, PT, OT, Respitory, swallow evaluation and blood work to include genetic testing.  

Now I could give the long story here, 2 more trips to Mayo and the bone biopsy to test for T Cell LGL (possible leukemia) and more from hemotology.  However, I will say in that month back and forth over there 3 times and staying for days at a time,  I was - scared and sad, anxious and angry, shuffled and shoved, pushed and prodded, poked and zapped, sliced and diced, filled with barium and drained of blood and marrow....it was A LOT. l lived to tell....only with the Lord's help.

During all of this, I was advised by PT at Mayo to start using a walker in the house.  On our night back from there, I got up to use the bathroom, without a walker and fell.  I ended up with a compound wedge fracture on my T 12.  Help.....  Like I said it's been super hard time for me!  

I joined several Myositis support groups online, started aqua therapy, PT, OT and video visits with a grief counselor.  My local neurologist tells me I'm the only one with IBM that he knows of.  It is VERY rare and even doctors don't know about it.  I have had to explain it to every professional I see.  I think, for women, it's a "1 in a million" chance.  

What is inclusion body myositis (IBM)?

The first muscles affected in inclusion body myositis are usually those of the wrists and fingers, and the muscles at the front of the thigh. The muscles that lift the front of the foot also may be affected.

Inclusion body myositis (IBM) is one of the idiopathic inflammatory myopathies (IIMs), a group of muscle diseases that involves inflammation of the muscles or associated tissues. The IIMs are sometimes referred to as simply “myositis.” It has become clear, however, that many forms of myositis exist. In IBM, inflammatory immune cells invade the muscle tissue and concentrate between the muscle fibers. These immune cells are recruited to and surround “inclusion bodies,” which contain cellular material from dead tissue. IBM is distinct among the IIMs for the presence of these inclusion bodies, which can be seen by muscle biopsy. It is estimated that approximately 20,000 people in the United States (US) have IBM, though the exact prevalence is unknown.

What are the symptoms of IBM?

IBM causes progressive weakness of the muscles of the wrists and fingers, the muscles of the front of the thigh, and the muscles that lift the front of the foot. 

What causes IBM?

The cause of idiopathic inflammatory myopathies like IBM is unclear. The body’s immune system turns against its own muscles and damages muscle tissue in an autoimmune reaction. The cause of the muscle degeneration that occurs in IBM is unclear as well.

What is the progression of IBM?

IBM usually develops after age 50 and is more likely to affect men than women. The disease progresses at different rates and with different symptoms in each person, but does not typically affect life expectancy. People with IBM may, however, experience persistent symptoms that require constant management over the course of a lifetime.

What is the status of research on IBM?

Research studies to increase the understanding of IBM and clinical trials of medications to treat IBM are underway

I have been looking back at pictures of myself and believe it began 2013.  By August of 2014 I had noticable muscle loss in my left calf.  I have had people say "are you in pain?"  I would reply, "nope, no pain, just weakness."  Around this past Christmas a customer asked "what is wrong with you?"  Not mean like, just asking.  I said, "the only way I can explain this is to say, when I go to bed at night, I say good bye to that Jacky because in the morning when I wake, I've lost a little piece of me."  That is IBM.....

Blessings from Ringle, Wisconsin.