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dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 9/7/2009 9:03 AM (GMT -6)   
Has anyone had problems with dystonia before?  I went into the ER last night because my neck muscles were tightening and twisting my neck into painful positions.  The doctor I saw thought it could be a rare reaction to Mirapex, which I take for RLS/PLMD.  I was just wondering if anyone experiences this as a symptom of MS?

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

http://diannaschnabel.blogspot.com/


PrayerWorks
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 9/8/2009 1:36 AM (GMT -6)   
I've never been diagnosed with dystonia but your post has similarities that I have experienced. When I was around 10 I had turned my head to speak to someone but then couldn't move it back. My muscles and neck were just stiff and frozen. A GP doctor painfully turned my head back forward, threw a neck brace on me for over 6 weeks.  Well, in my early twenty's I experienced another episode w/my neck. I awakened one morning thinking I must have slept wrong but it became worse as time passed. I ended up with my neck frozen in a sideways position w/a small tilt forward - It took extensive therapy for over 4 months to get my neck upright and muscles loosened.
 
I know this is not directly answering your question; however, my neuro believes that I've had MS since I was a juvenile based on history. So my "neck" experiences could have been connected to my MS. Unless it happens again I'll never know for sure.
 
Please keep me posted if you find that there is a connection with MS and dystonia.
 
Thanks,
PrayerWorks
Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thessalonians 4:17,18
 
Just started Copaxone 06/2009
Monthly IV Solumedrol since 03/2009
Diagnosed RRMS October 2008
ACDF C6/C7 May 2008
ACDF C5/C6 May 2005
 
 


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 9/8/2009 8:40 AM (GMT -6)   
Thanks Prayer Works.  It helps to remember that my body isn't the only one that does crazy things. :)

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

http://diannaschnabel.blogspot.com/


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 9/8/2009 9:38 AM (GMT -6)   
Heloo there and good morning.  I get a great amount of muscle spasticity in my neck and shoulders....I get it to the point sometimes that it knocks my spinal column out of joint in the neck area.  Sometimes it will just slip back into place, and other times I have to go to a physio therapist to release the muscles in my neck so that the neck joints fall back into place. It can be quite painful at times, and I do find that it can make me feel light headed when the joints in my meck are out of whack....
 
Gary

tkeys
Regular Member


Date Joined Jun 2009
Total Posts : 31
   Posted 9/9/2009 8:51 AM (GMT -6)   
I was not diagnosed with MS, but I just saw a regional MS expert for a final diagnosis about my condition.  At first, I had terrible muscle spasms that were debilitating.  She said she did not believe these were true muscle spasms.  She said they were something called "kinesegenic dystonia". It pretty much means dystonia caused by movement. They are also referred to as tonic spasms. It happens in MS and in my case happened because of the lesion in my brain stem. She said she would recommend dilantin, tegretol, or even topomax for these almost seizure like dystonic episodes. I don't know if this helps, or if this could be what you are experiencing, but I thought this was good information that she gave me that I could pass on. Hope you get to feeling better! God bless!
23 years old;
Dx: Acute Disseminated Ecephalomyelitis (ADEM) Feb 2009
Meds: Provigil, Nexium, Lexapro, Adivan, Lopressor, Baclofen, Topomax
Did 1000 mg IV solumedrol for 8 days then weened for 1 and a half months from mid Feb-late March
 

A merry heart does good like a medicine; but a broken spirit dries the bones.

Proverbs 17:22

 

"This too shall pass."


Quack
Regular Member


Date Joined Feb 2008
Total Posts : 29
   Posted 9/9/2009 10:22 AM (GMT -6)   
Hi there... I have PPMS and also movement problems with my neck and head movements. The Dr mentioned dystonia and wonder if it's that or some other movement disorder. Mine doesn't get as bad as you have mentioned about yours. I have movement like back and forth and forward and back... it does get my neck sore and quite bothersome. I am on Gabapentin to see if it helps...no help so far.

take it easy
Quack

dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 9/9/2009 8:43 PM (GMT -6)   
Thanks for all of the feedback.  I was a little skeptical of the ER doctor's diagnosis of a drug reaction and I just wanted to know if the dystonia could be an MS symptom.  My neuro called on Tuesday and wants to see me next week, so hopefully she will be able to figure out what is going on. 

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

http://diannaschnabel.blogspot.com/

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