The Dystonia Diaries

Hi, I am M.C. Hudson, At 11 years old I began having mysterious falls and dizzy spells. At the time, I was tested for a brain tumor and later misdiagnosed with hypoglycemia. The misdiagnoses continued for the next 2 decades!
By 17 years old, I experienced an increase in falls, a change in my gait, at 20 years old I had my first big tremor(which we thought might be a seizure at the time). I was seen by neurology and evaluated for numerous degenerative diseases, including Parkinson’s and Huntington’s.

At age 29, I began having regular tremors, and got diagnosed finally with Dystonia. They then redacted this diagnosis shifted my diagnosis to FND, and diagnosed Dystonia again a year later!

I saw a PT at age 30 who wanted me to be seen by rheumatology for an unusual range of motion of numerous joints, especially my neck. This started the process of diagnosing Ehler Danlos Syndrome on top of Dystonia. I finally saw a geneticist to confirm this in 2021, but they neglected to ask about all of criterion 3 for diagnosis. I am adopted and they assumed I didn’t have family medical history.

As an adopted person who has had to navigate our medical system, I realized around age 30 that all of this misdiagnosis was partially due to a disconnect between the medical system and the adoption system. Why wouldn’t my doctors have ordered to legally obtain biological family info, so I could avoid medical trauma from unnecessary testing?

I did an ancestry DNA test at age 29, this helped to prove movement d/o’s in bio-family. My new doctor wants to do whole genome sequencing through a consumer DNA kit. I am switching neurologists after 8 years with one that told me “I would be lucky to find a neurologist who cares about me.”

I wanted to detail my journey to DX here for anyone new to my page. I am a hyper-mobile girlie with a tendency to tremor and tic. After all these years I am hoping for a closer look at my Dystonia and the movements that are still unexplained. I am wearing PJ’s. They are super comfy on my sensitive skin.

Follow

Today I took Mimi to to do some basic training! She looked fantastic in this Giraffe Headband and left it on just long enough for me to snap a few pics! My needs for a service dog include carrying items, picking up dropped items, fetching water from a fridge, fetching meds, full mobility work (forward momentum task especially), find exit, and more.

Today Mimi learned about taking off 🧦🧦socks!
Hope you all have a good rest of the weekend. Sending some love from Mimi and I! 💕🐩🐾