Going Over My Old CMT Records

“Referred mainly because of toe-walking.” 

“Well, these few words solve a bit of a mystery for me,” I thought.

A few weeks ago, I contacted my former pediatrician’s office to see if they had my old medical records. My folks have always kept good records. However, when I searched for my medical history regarding Charcot-Marie-Tooth disease a few months ago, there seemed to be a bit of a gap. I couldn’t find much of anything about my history with CMT. And I had questions.

For one, what was it about me that caused my pediatrician or my parents to refer me to a neurologist? To my knowledge, my brother and sister never went to a neurologist for a diagnosis.

When I asked my parents what prompted them to ask for a referral, they gave me different answers at different times.

But I think part of “adulting” is at least trying to get some kind of control over your own medical information. And I’d much rather not have to repeat the same steps of diagnosis and testing the next time I see a neurologist.

Unfortunately, the records I was looking for were so old that the pediatrician’s office had put them in archives. And while the stereotypical millennial in me would rather spend $50 on craft beer or avocado toast, I ended up paying it so the office could make copies to mail to me.

It was an interesting experience.

Going over the reports was illuminating for me. They answered some of my questions. And I got a chance to get a third-person view of my childhood — albeit a bit of a cold one — with descriptions of my mentality, physicality, and my CMT symptoms.

On one hand, reading the notes from the neurologist’s point of view brought back many memories.

I had forgotten how big a role physical therapy played in my early life. And I felt an odd sense of pride reading passages about myself like, “His hand muscles showed no wasting.” I chuckled every time the doctor’s notes misspelled my name.

“Since last being seen, Yung has done quite well. He remains active, enjoying swimming and generally fulfilling most of his functional requirements, except for physical education testing in school — something he dreads. He does complain of leg cramps at night and sometimes cries from these. He reports that his feet feel like they are twisting. He has been outfitted with ankle-foot orthoses, which he generally wears.”

On the other hand, some comments were pretty humbling. I could feel my cheeks blush with embarrassment when I read the notes about my level of kyphosis. I didn’t even know kyphosis was a symptom of CMT until this year.

No one likes feeling as if there’s something inherently wrong with them — their body. However, I think it’s important to confront your medical history to best prepare for the future. And of course, it’s not like my medical reports define me anyway.

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Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.