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Mike Harper

My name is Mike Harper and my first indication that I had a physical issue developing came on an evening while I was on patrol. I noticed a strange sensation occuring in my thighs. It felt like someone was tapping on the anterior surface of both of my thighs at the same time. I blew it off as a meaningless twitch like happens with a persons eye occasionally.
The next event also happened on duty. I received a dispatch for a person involved in a domestic dispute. Upon arrival a man fled from the location on foot. After checking the female victim I continued a foot chase of the fleeing male. I caught up to him about a hundred yards from the original location. I took him in custody but noted I was breathing very hard….could barely get my breath. I was used to running miles and feeling fine. This was a short sprint and I was breathing like an out of shape couch potato!
I began to workout at the gym harder. I was thinking I had been spending too much time in the patrol car or behind a desk. I noticed during the next few weeks that walking up steps at the house and at the department that it felt like someone was holding onto my ankles. I continued to step it up at the gym. I just felt like I was losing ground instead of gaining.
The defining moment came when I was in a local hospital doing a follow up investigation for a car crash victim. I was kneeling down in the lobby of the emergency department speaking to a family member of the injured person. I finished my questions and went to stand……and couldn’t! I was shocked, scared and embarrassed all at once. I leaned on an end table to push myself up. Walking to my car knowing something was definitely wrong with me.
I made an appointment the next morning with my local general practice doctor. I was able to get an appointment that day. I explained and demonstrated my symptoms for her. She reffered me to a neurologist.
following a several weeks wait, I met with this neurologist. He made me feel very comfortable as soon as I met him. After the same explanation to him as I had given my GP he calmly looked at me and said….you either have muscular dystrophy, ALS or Polymyositis. He then perfomed an EMG which was not conclusive. He then set up an appointment for a biopsy of my right quadricep.
That was the next step in receiving bad news.
The next day the results were called to me by theneurologist himself. He said he wanted me on a high dose of Prednisone as well as Cellcept to treat a diagnosis of Polymyositis.
following 2 yearsof gaining weight, losing more muscle and strength I requested a second biopsy. You see…I had done a great deal of research for this disease and found my degrading conditions were an indication that I had been misdiagnosed.
The second biopsy and tissue from the first test were sent to Indiana University Medical Center. It was determined that both sets of tissue were indicative of Inclusion Body Myositis.
The symptoms had started in 2005 medical help was sought in 2006 with a misdiagnosis.in 2007 I resigned my position as a police officer, a job I had always wanted and loved doing. In 2008 I had stopped most of the meds…thank goodness…I then continued my research on the disease I had become a victim of.
It is now August of 2013 and I am in a Permobil power chair, I have lost the use of the little and ring finger of my right hand, the left hand is following the right closely, we are now getting estimates for a bathroom remodel as I cannot get off the assistive comode very easy now.
I am not one to quit on anything….I had my brothers put in an overhead ceiling lift in my garage to which I connected a rubber swing. I use the swing and lift to hoist me onto my zero turn mower so I can do that.
We are now looking for camping supplies so we can try that again.

We will be at the Myositis convention in Louisville in October…..hope to see you all there if you can come.
Sorry about the typing….fingers not working well…lol

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2 responses to “Mike Harper

  1. Darla

    September 1, 2013 at 1:34 pm

    Mike, thanks for your story. I myself was diagnosed with what the blood work said was LGMD 1b April 2012. Then July 2013 seen dr again and she decided to do blood work to see about the VCP mutation for IBM and sure enough it came back with IBMPFD. See I am the 5th member of my family to be diagnosed with MD. My older brothers biopsy told him IBM and all the others (granted father and uncle was 25-30 yrs ago) LGMD and my father was also told possible Polymyositis.
    None of the drs have said anything about any meds to take or anything.
    My question for you do you think with your misdiagnosis then taking the meds made you go downhill so fast?
    I wish you the best as I know it can get ugly having lived majority of my life seeing a family member deal with MD.

     
  2. Linda Miller

    June 15, 2014 at 3:50 am

    Hi Mike, I read your story to my husband and he related to you not being able to get up from a kneeling position. He is a Vietnam vet with IBM. He blames Agent Orange. Best wishes to you.

     

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