Unraveling The Struggles of Getting Diagnosed - CMT Awareness

This is part of my story that no one knows, except family and close friends.

I wanted to keep it that way. I wasn't sure others would understand, and part of me still doesn't. After a lot of prayer and guidance on what to share and not to write about, I decided that I'm ready. As CMT Awareness Month is just around the corner, I thought it was the right timing. I encourage you to read the whole blog post.

It all make sense at the end.

"You don't have CMT."

Tears already started falling as the nerve conduction test brought pain and discomfort. But that's not the only reason I felt upset.

I tried to keep it together. How could this neurologist say this? It had to be a mistake. I was confused and devestated. The thoughts raced through my head as I went through a similar circumstance years before, when I was about to graduate from high school. Only this time, I wasn't a teenager who was scared about what the future held. I was in my early twenties, about to graduate from college, and ready for whatever God had for me. How did I not see this coming? How was is it that none of the other doctors caught this?

I didn't like the feeling of having to start over. I didn't want to go through more years of not knowing what was wrong. I finally learned to accept more of the daily challenges and was even advocating for others with disabilities. There was some relief during those years.

What reason did God have for me to go through all of this pain?

This was one of the hardest and most discouraging medical tests or appointments I've experienced. But, I believed this specialist like the other ones before.

I thought it meant that I couldn't write about CMT anymore. I was worried about what others might think. Maybe they would question why I waited so long to go through the medical testing to confirm. Or wonder why I was so open about sharing my journey when I didn't understand. But, on the inside, I knew there was something wrong. The search for an answer was not over.

After graduating from college, I continued moving forward. I only shared about this day with a few friends and mentors outside of my family. But, I did meet others with CMT. I helped at a camp in Oregon during the summer and particpated in a local Walk 4 CMT event that fall. These experiences help me to see beyond just the struggles I face. It helped me to realize that even if the neurologist was right, I still cared about bringing awarness. That part wouldn't change.

But, it turns out the doctor was wrong. I was wrong.

I just needed a different neurologist, a second opinion, and someone who wanted to help.

I eventually went to another neurologist and got a confirmed diagnosis of CMT. This time, the tears started to go down as this specialist believed there was something wrong, and even if it wasn't CMT, she was determined to figure out what.

But I still went through a year of wrestling with the confusion of not knowing for sure. The other neurologist I'm sure was confused why I was crying and questioned the results. There is no cure and not a lot they can do. I should have felt relieved.

I knew there had to be something wrong. All of my symptoms pointed to CMT and it only made sense as it's in the family.

This part of my journey helped me to understand what others go through. There are those who struggle for years without a confirmed diagnosis and are not believed. It's like a puzzle that is just missing that one piece to see the whole picture.

I hope this encourages those who are undiagnosed to keep trying and searching for answers. It's not the easist season to go through, but you are not alone. Just because you don't have an answer to the pain you are experiencing today, doesn't mean there isn't something there.

As we are entering in the month of September, I hope you are encouraged by the stories from others living with CMT. It's hard for me to believe this is the 5th year of this series. I'm grateful for another year of bringing awareness and hopefully some helpful advice.

Everyone's journeys are different. But, isn't that the beautiful part?