anyone help me?dystonia

[alison1972]

hi im awaiting results of an mri scan and eeg,trying to find out whats wrong with me and came across someone with dystonia(proxysmal)what i think i have..the symptoms are identical.i have severe muscle spasms over my entire body,the spasms are so severe its seizure like,and im on 20mg valium a day at the minute to stop these until a diagnose is confirmed.it starts with a curling under of my toes and the spasms work there way up my body..these can last for hours and occur for weeks every day then stop  for a week.my arms feet and legs twist inwards when i have these spasms,and i always know when there gonna occur cos my muscles ache for hours before it happens.anyone know if this sounds like dystonia?

[frenchy335]

i myself have been in pain 4 the last 3 years test after test even had my hip replaced  my left foot drags and still in pain now they think its dystonia sometimes i wish my life would end as icant walk or go out without my husband still awaiting appointment 2 see dystonia clinic

[Sylvia108]

If the symptoms comes and goes you may have Paroxysmal Dyskinesia, which is a form of Dystonia that comes and goes. There are several varieties  PNKD has shorter lasting episodes that can be triggered by startle as well as temperature change, coffee, alcohol, and other stimulus, while PKD has longer lasting episodes which are never triggered by startle. I have PNKD, and have had some relief from taking Valium when it gets really bad, though I prefer to mainly deal with it through natural methods.
Please feel free to contact me, I'm happy to share all I have learned about it.  I also suggest you go to the www.wemove.org site to get their very comprehensive descriptions of the condition.
Alternately, you should also be checked for Wilson's Disease which is an inability to synthesize copper in the body.

Paroxysmal Dyskinesia is typically very hard to diagnose, so don't despair if you get the run around. Unfortunately It's par for the course.


Wishing you  all the best.

[Dr Santos]

Hi, the diagnosis is obtained primarily by your medical history and the physical and neurological examination done by your neurologist. Your video is helpful but will not provide a basis for the definitive diagnosis.  EMG will show pulsating nerve signals being transmitted to the muscles even when they are at rest and causing them to pulsate, tremble and contort will help in the diagnosis. Since you have not experience any of these symptoms with your medications for the last 6 years, we can rule these out as a cause. In most cases, laboratory tests are normal and used to rule out other disorders that are differentials.

Do update is with your MRI and EEG results. Take care and regards.

[alison1972]

sorry my meds are anti psychotics..lithium zyprexa and efexor plus zopiclone and now valium for this..ive been on these for 6 years..

[alison1972]

hi,ive been experiencing this for about a year now.yes i do get this at rest,it normally starts at rest but i dont have the movements 24.7..i have the pain 24/7 and when it happens my hands and feet turn in and my toes curls under and then my whole body starts .its like im fighting in all honesty..does this sound like dystonia..i have took a video of an episode of one of these to my neurologist.do you think he would be able to tell from the video if is dystonia?thanks alison

[Dr Santos]

How are you? How long have you been experiencing this? Do you experience this at rest? What medications are you taking? Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. There is continuous pain, cramping and relentless muscle spasms due to involuntary muscle movements. Dystonia can affect just one muscle, a group of muscles or all of your muscles. While the cause of dystonia is not yet known or understood, definite diagnosis can be obtained through Electrical sensors inserted into affected muscle groups.The first step in treatment is attempting to determine the cause of the dystonia. You can read more about this through this link: http://en.wikipedia.org/wiki/Dystonia

I hope this helps. Take care and keep us posted with the MRI and EEG results