Paroxsymal Dystonia

[JayJay327]

Dear Nuerologists,
FYI: I am currently a 22 year old male, but from the age of 18 to about 20, I had an extremely painfull condition/situation that had me in and out to the E.R. for weeks. When I eventually got around to seeing any specialists, the "diagnosis" that kept getting tossed around was "Dystonia" and more in depth was "Paroxsymal Kinesgetic Dystonia". This "issue" only seemed to have affected my lower back and right side of my body, bascially working like Dystonia and permanently tensing those areas for about 14 or so hrs and putting me in the absolute worse pain of life.
My day would start out normal as any but would slowly progress and towards the later evening of that day I would have a full flegged "attack" or "flare up" and be unable to move by lower back or right leg the way I wanted. Given that the pain was completely un-bareable I was prescribed meds such Percocet, Diladud, Valium, Lyrica, Nuerotin, Mobic etc. These "flare ups" happened every day for quite some time (about a year) then they began to become more spaced out (every two to three days) then they became isolated and eventually stopped. I was seen at the Duke University Medical Center several times and they had quite a "team" of doctors specializing in nuerology, muscles, etc. working on my case. I have had MRIs, CTs, Xrays, EKGs, EHGs, etc and Duke could not come up with a conclusive diagnosis they were happy with, or seem to give me a "treatment plan". I eventually just stopped seeing any doctors and learned to live with it, and now as I have already stated it seems to be gone. My questions are is it possible that my "issue" is not gone, but only "dorment" and may rise again? Can Dystonia or something along the lines of my situation be hereditary? Maybe you or someone can shed some light on this situation or point me in the right direction. Any help at all is greatly appreciated, thanks for your time.

[JayJay327]

Thank you so much for your input. I have a kid on the way in less than a month and I am quite concerned if he will have to go through what I did. I did some research on the diagnosis you mentioned (PKD) and found that it was similar but did not closely resemble my symptoms. I was actually never diagnosed, those were intially readings by the doctors at Duke University Medical Center but they were never confirmed. Their intial diagnosis, that was never confirmed, was Paroxsymal Kinesgetic Dystonia not Paroxsymal Kinesigenic Dyskinesia. My research shows that these are very similar but for the most part the symptoms for PKD are known to last for a few minutes or so, Mine lasted for anywhere between 14-16hrs, and was so painfull that it often put me into shock, which then would give me panic attacks in conjuction with my symptoms thus resulting in shaking, severe sweating etc. My symptoms, however, did start out slow and progressed. I would say over about an hr, I would be in a full "flare-up" of symptoms to which narcotics help me to sleep but did nothing for pain, or to relax my muscles. At times it got to the point where I would have to be covered up in blankets because wind would feel like razor blades, and agian this was just my mid-lower back and entire right leg. Would you happen to have any information on this Dr.? or maybe direct me to a Nuerologits who has seen many Dystonia cases? I can not currently consult a doctor because I am currently not experiencing symptoms. Again, thank you so much for your reply.

[Dr. Kokil Mathur]

Hi!
If the diagnosis was indeed Paroxysmal Kinesigenic Dyskinesia (PKD), then the symptoms can decrease in late 20s and 30s.  If it is primary PKD then yes, it can be familial (run in families) and have a genetic background. However, if it is acquired PKD, it can happed due to multiple sclerosis, low or high blood sugar, low blood calcium etc. This can be easily treated by taking care of the cause. Please discuss this with your doctor.
Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.

[JayJay327]

another diagnosis that got thrown out there was "Psoasitis" which is exactly as it sounds. Really just a discription of symptoms about my "Psoas" muscle in my right leg being inflammed. This "diagnosis" happend towards the end of issue and it is quite likely that this inflammation was a side affect of my issue like the my fluid in my right knee, nerve damage, and back issues from the "distortion". Again any help is greatly appreciated.