An Unexpected Journey
by Guest Author, Dawn DeLude
I believe my journey started innocently enough. Tingling and pain in my hands, not able to hold things like I used to. I went straight to, “I have carpel tunnel syndrome. A little surgery and I’ll be all good”. I went through the testing for CTS and at my appointment with the doctor for the results, when I thought I would be scheduling surgery, he held my hands and said, “I want you to go with my nurse down the hall and schedule an appointment with a neurologist.” Totally freaked out, I didn’t make that appointment and the next thing I know my feet and the side of my face were also tingling and then my tongue was also feeling odd and I had a headache. This led to an immediate trip to the ER where an MRI of my brain was conducted. The ER doctor asked me questions and suggested that there were lesions in my brain consistent with Multiple Sclerosis (MS) and that I should follow up with a neurologist as soon as possible.
Again I wait and the tingling grew. I noticed that I was having issues with strength. So off I went to a neurologist where more MRI’s were done along with other tests, but still no conclusive results. I waited some more; found a neurologist who was considered to be the top in the area of MS. More tests, more inclusive results. Finally I consented to a spinal tap figuring it would be positive for MS and I could get on with life. No such luck. Sitting, crying in the neurologist’s office as she basically told me she couldn’t help me and I’m not so sure she believed that I was having more issues with losing strength and was often more exhausted then I can ever remember being.
My wonderful primary care doctor pushed me for the next two months to continue to find out what was going on. My CK level was through the roof so she knew SOMETHING was up but couldn’t put her finger on what.
I also have the great advantage of having pain that comes to some with IBM and some days that stops me dead in my tracks.
Finally I landed at the University of Minnesota and within an hour I heard the words “a form of myositis.” Another month of testing; muscle biopsy, skin biopsy, EMG, etc, and I was diagnosed with inclusion body myositis (IBM) and small nerve neuropathy along with bursitis in my hip caused from the IBM.
I was so lucky to have found a great neurologist at the University of Minnesota!
So, at not yet 50 years old, I have a disease that no one has ever heard of, a family that includes now teenage boys, and certainly NOT the life I planned.
I am trying to work full time in my career as a special education teacher but am discovering being on my feet all day is exhausting me and I can’t always care for my family.
I hate this disease but I am not at a point where I am ready to give up. Unfortunately I also have the great advantage of having pain that comes to some with IBM and some days that stops me dead in my tracks.
I don’t know where my IBM will take me but I am hoping to milk as much out of life as I can before I can no longer walk.
