Have you seen many cases of Myoclonus?

Here is My Question:
I was wondering if in your practice you have seen many cases of Myoclonus? I have been experiencing painful "spasms" for a couple of years now that we have been unable to really control. I have tried and failed many different drugs such as Gabapentin, Pregabalin, Baclofen. We then went to Trileptal which did help and still helps but at my current dose of 600mg 3x a day I have developed Hypoanatremia so we have been trying different drugs to replace the Trileptal. My neurologist finally diagnosed me with myoclonus /dystonia as I get these spasms in my right shoulder area causing my head to jerk forward.

Other drugs I have tried and failed on recently include Vimpat, Keppra, Tizanidine, Lyrica, Lacosamide, and now Clonazepam which is also not helping.

The partial relief I get with Oxcarbazepine is the best I have at this point. I am beyond frustrated, and I just wanted to know if any of the doctors here have patients with similar experiences.

My leg weakness, fatigue, etc. are things I can deal with, but this is truly decreasing my quality of life.

Answer:
We do see myoclonus in people with MS, but it is not painful unless the sudden jerking movement involves a joint of soft tissue with arthritis or some underlying injury.

Most painful involuntary movements in MS are a form of dystonia called tonic spasms. These spasms are responsive to Carbamazepine, Oxcarbazepine, and other anti-convulsant class medications. 
There are other options for your doctor to try. He or she may consider adding lamotrigine first. If adding lamotrigine doesn't work some people will respond to phenytoin. 
It sounds like your doctor is doing a good job of trying different medications. Keep working with them to find a more satisfactory solution. 
Good luck

Revere P (Rip) Kinkel, MDProfessor of Neurosciences
Director of the Multiple Sclerosis Program
University of California San Diego​