Paroxysmal Dyskinesia

[evdo]

I have had paroxysmal Dyskinesia since I was an infant and now I'm 42 years old. Over the last year I have been having severe muscle spasms in my shoulders and back that I have had to visit the emergency room several times. My right foot also seems to be turning in and I have ankle pain. Is this to be expected? I see my neurologist twice a month and she does not have any answers. I would appreciate any help.


Thank you,

EVDO


This discussion is related to Paroxysmal Dyskinesia.

[Will_Bmore]

I am a 24 year old male, I have had PKD for 15 years now (I didn't start having it until I began puberty), for me it is hereditary, my mother had it until she finished maturing around 25 (it is unclear if the same will happen for me). I have been taking prescription Dilantin (Phenytoin) for 14 years now and I was 10 yrs old when I started on about 100mg daily and now at 24 I'm around 400-500mg daily. While taking it I have no symptoms, when I do not take my medication my episodes occur whenever I am in a prone position and quickly get up or move, they last from 5 to 45 seconds. I do not know of any support groups unfortunately, it was difficult during my adolescence because I didn't really understand the disorder and at that age it is a hard time in general for self discovery, but just make sure you keep her informed about what Paroxysmal Dyskinesia is, and that she didn't do anything to get it or give it to herself, and that it can be treated. I haven't had any direct complications from the disorder during my life, but I did have issues feeling different from everyone, in a way somehow flawed  but I got treatment and then it wasn't as big of a deal for me. If you can find a medication that stop it that is the best help and if necessary therapy in general may help, if she has emotional complications from it. My neurologist is Dr. Hyder Jinnah he was located at Johns Hopkins in Baltimore, Maryland, but now in is in Atlanta, Georgia.  (as a disclaimer every case is unique though)

[KOhio]

My 7yr old daughter has recently been diagnosed with Paroxysmal Dyskinesia and has been getting progressively worse with episodes.. You stated you have had for several years. How has this disorder affected your life?  Is there any support groups out there for this disorder?  She has new symptoms everyday and the doctors don't seem to know much about this disorder. Who is the best out there for treatment?
Thanks so much

[DrNoopurMD]

Hi,

How are you?
Paroxysmal dyskinesia is characterized by abnormal involuntary movements. These movements cause increased muscle tone, writhing movements, distorted posturing and uncontrollable flinging movements. These movements are unpredictable and usually occur without warning.
It is very likely that your present symptoms are due to paroxysmal dyskinesia, however nothing can be said for sure without a clinical exam. Please seek a second opinion on this.
Take care!