Hello folks. 12 Months ago I started to have right shoulder instability, that was diagnosed as scapula dyskenisis with scapula winging. I had a loss of strength in the right shoulder as it would drop when I tried to do simple things like turn on a light or open a door.

Six weeks of physio to stabilize the shoulder, particularly some wasted Rhomboids failed to do anything and the condition got worse. X-rays, CT scans, Ultrasound and an MRI showed some bursitis, torn ligament and arthritis in the shoulder. I had cortisone to help with the healing and that seemed to make things worse, as a rhythmic rolling motion started to take hold in the shoulder.

I ended up with a Neurologist and was diagnosed with Segmental Myoclonus. I took Clonasepam and Sodium Valporate for several months and also got botox in the neck and right shoulder. Nothing worked and the shoulder movements turned into a powerful jerking motion.

A few things to note
1. There's no pain associated with this condition. Just stiffness in my neck.
2. The condition when it started was action induced. By that I mean the shoulder only showed instability when I tried to do something I.E. open a door.
3. The issue when it first started was only when I was upright. Sitting and lying down caused no problems. It now occurs when I'm sitting as well

I've had blood test as well as Brain MRI's, EMG etc and they have revealed nothing.

I was referred to a movement disorder specialist who diagnosed Segmental Dystonia and prescribed some more powerful drugs. They made the shoulder jerking every worse and in the end after trying several different drugs we stopped drug therapy. The Neurologist now thinks it's not Dystonia, because the drugs should of worked or done nothing. The fact they they make things worse does not tie in with dystonia.

The Neurologist has decided to Do botox in the Levator Scapulae, which makes sense because that muscle stretches from the top of the scapula to the neck. When the shoulder jerks I can not feel any muscles tensing, but I can feel the scapula on the top of my shoulder trying to burst out.

If you look for "My Dystonia" on YouTube, you will see me.

I'm pretty certain that I have a case of Levator Scapulae Syndrome that has gone ballistic for some reason.

Any feedback would be greatly appreciated.

Zac

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