Finally "it" Has A Name!

The start ( what I thought was the start) of my experience landed me in ICU at medical research school the end of January, 2012. We all thought I was having seizures. They hooked me up to the horrible strobe light test, and my body hated them. The hospital observed me for 36 hours pumping me up of anti seizure medications, which I think triggered my PKC. Here I had a full team of neurologist at my side, and not one of them could think out of the box of epilepsy. Therefor; they labeled me as s "psychogenic".

We (myself and my family) was then interviewed by the psychologist team. Who in return said, "it is not psychogenic, it is a neurology episodes. In a nutshell, the team gave-up discharged me and informed me to follow-up with my family doctor. Here's the kicker, on their notes they said it was "psychogenic" and I had to follow-up with therapy. That one little line would follow me at appointments! The very next day I saw my family doctor. I had two full-blown full body episodes right in front of him. It only took my family doctor five minutes to see what the others could not, he believed I had Dystonia! He prescribed me Baclofen, which helps, but I still have issues, nothing like I did that week in January. Then I had them every 10-15 min. However, he is a family doctor and I had to be diagnose by a specialist.

After seeing another highly respected neurologist at another highly respected medical research school the note "psychogenic" came back to hunt me. He slowly took me off my medications and told me it would be over; far from the truth! It has been a long few months, but yesterday I was finally diagnose with Paroxysmal Kinesigenic Choreoathetosis, which she said mine has Dystonia effects. She is keeping me on my Baclofen and is also putting me on another medication as well. I had an episode start will driving and that is why she is keeping me on both medications. Come to find out my new neurologist wrote a research paper; " Paroxysmal Kinesigenic Choreoathetosis: a report of 26 patients. I am now confident I have the right doctor!

After reading a few a post on here, I noticed two things:
1. someone mention strobe light effecting them
2. someone mention cooper and list off some foods, which sadly, I am guilty of eating chocolate, peanut butter, breads, and avocados. My life little pleasures :(.

Also, just wondering if I am alone in this one; when the nurse was checking me in and was asking me questions, she asked me if I ever see things that aren't there. I tend to think I see one of my children (as a shadow, or in the corner of my eye, nothing like a clear image) and a cat or dog, running past me, but they are not there. However, that was all that was said about that. I wish I asked her way, now it is bothering me. Does anyone else have that happen? The things we wished we asked after the fact.

I am glad I am no longer alone with my issues!
CKEH CKEH
36-40, F
May 8, 2012