Posted by RJ on June 27, 1999, at 18:44:16
Just saw this web page mentioned on my regular dystonia BB. I have had dystonia synmptoms for most my life, but had a late-onset of generalized dystonia July 22, 97. I have seen a very well known physiction at Baylor Houston who treats parkensons and dystonia. At first onset, I had to take the MMPI I, MMPI 2, and of course the Ink Blot test, MRI, Spinal Tap, EEG, and all the blood workup for deseases including desises from other countrys. I PASSED ALL TESTS WITHIN NORMAL RANGES, yet, they continue to lable me with this phsycogenic labeling.
I asked what caused this type of dystonia and they said it is caused by depression. Although I did not have any depression signs at time of onset. Even my tests showed that!
A conversion disorder usually goes away after a few weeks, and they said my dystonia would also go away in a few weeks. They were wrong. Now, I am searching for answers . . . the mental health people just assume that is what it is even without accurate proof. This inrages me, I am stuck here everyday dealing with a very cruel and physically distorted body and on 6 different medications at this time. I use my Amigo for movement that is outside my home as I fatigue very quickly and am able now with the Zaneflex, artane, clanazepam, Remron, Anitriptaline (sp?) and Indomethecin, to move about my house slowly from room to room holding on to things so I don't fall. Still freezing or halting and can't move unless someone nudges me or I just fall down when the body spasms hit.
Anyway, just thought I would as "Toby" since I see that he has been willing to shed valuable and concrete information to many here on this board! I repect that he or You if you are reading Toby, you are willing to take your valuable time to lend support to others with depression. It is my hope that people will open up and learn more about Dystonia and how it distorts because if I have the phscogenic kin, and are not even depressed, those who are currently facing depression head on will be aware of this risk. There are many people around the world who suffer from depression, and most have never even heard of a conversion disorder or dystonia.
I will have had this nasty disorder for two full years July 22, 1999! But, they again state it is caused by depression. Odd, since they also state in many dystonias the cause is unknown?????
Toby anything to add to this? And know that dystonia is 6 times more prevelant then huntingtons disease and other movement disorders as well.
Dystonia awarness is all I want really, then maybe others won't look at us so strangly. If you would like to read more about dystonia this is a good place to start!
http://www.dystonia-foundation.org/index.html#A1Good luck all who face the dificulties of depression . . . fight hard cause this dystonia is well, a total desaster!
Thanks,
RJ
poster:RJ
thread:7925
URL: http://www.dr-bob.org/babble/19990601/msgs/7925.html