Any "mild" ST/CD folks in this group??
I'm just wondering.
I read so much regarding those who have had DBS, selective denervation, are on multiple meds or have significant (multiple) body parts affected I wonder if there is anyone contributing to the board who is "like me"...mild and needing only occasional clonazepam to minimize what seems to be situational, involuntary neck movements.
My ST/CD was more pronounced years ago (2000-2001) and I had Botox injections that were very helpful. Over the course of a couple of years, the ST/CD subsided to near non-existence for 4-5 years then reared it's ugly head for a few months in 2008 (enough to have me meet with a neuro again) but has since, become reasonably mild.
KathyK
I read so much regarding those who have had DBS, selective denervation, are on multiple meds or have significant (multiple) body parts affected I wonder if there is anyone contributing to the board who is "like me"...mild and needing only occasional clonazepam to minimize what seems to be situational, involuntary neck movements.
My ST/CD was more pronounced years ago (2000-2001) and I had Botox injections that were very helpful. Over the course of a couple of years, the ST/CD subsided to near non-existence for 4-5 years then reared it's ugly head for a few months in 2008 (enough to have me meet with a neuro again) but has since, become reasonably mild.
KathyK
Replies to This Discussion
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Permalink Reply by Jenn on
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Ive often wondered about this.. because after hearing other people's stories I consider myself mild (although I am hemidystonic) I only take clonazepan on occasion.. I respond to really good massages.. (temporarily) I have episodes that last 1-2 days that are painful but as long as I rest I can survive it. .. Mine has been so mild for so long from 1994-2004 I really didnt notice it, except when I was fatigued from overuse of that muscle (mostly my hand or foot) .. After baby#2 My symptoms increased and I was diagnosed as having 'highly limited range of motion' but it was still not to the point where my quality of life had changed until 2009.. When I --on occasion-- maybe 2x a month am not able to stand up and walk, and maybe 2x a week am limping. Hmm.. I dont know.. even though most of the time I cant sit, drive or walk without pain or difficulty-- Id still consider myself mild. ..
Would you say 'mild' is subjective or is there some actual clinical definition for levels of dystonia?
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Permalink Reply by KathyK on -
Thank you so much for responding, Jennifer. I believe there is a "scale" (and someone feel free to expand upon this) that "rates" ST/CD and probably other types of dystonia. When I had a neuro appt. in Nov of 2008 after my ST/CD surfaced again, I was told I was "mild" and would agree with that.
I have had the wonderful opportunitiy to meet others with dystonia (mostly ST/CD) and would certainly make the comparison that my ST/CD today is mild. It was even "more mild" in the previous few years (than today) but at my onset in 2000, it was more pronounced...never severe (by my observation/comparison) but certainly more than "moderate". At that time it was very painful and my left SCM was HUGE with my neck/face always turned right and upward. I walked like a crab...sideways.
This time...the involuntary contractions turn my head right and down meaning my chin buries itself sometimes in my right chest but that seems to occur only with certain hand/eye activities. Very peculiar...washing dishes, cooking (which I love) but not typing on a keyboard.
Fatigue definately affects my ST/CD though (recently with the resurfacing of symptoms) I have never been unable to carry on daily activities. I carry on all daily activities with a mild inconvenience...
What are the actual classifications??
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Permalink Reply by beka on -
Sounds like you enterd a remission phase...! 10 to 20 % of all patients with dystonia can enter this phase..Nope,. you are not that unusual. Does stress make things worse ??
There are NO definite classifications for Dystonia...Not on a formal scientific basis !! Maybe we can develop them here, gang ???
beka
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Permalink Reply by freida may on -
KATHY, i have generalized dystonia, mostly in my right upper leg and some in my left arm that just awoke afew days ago. I take Klonapine 1 1/2 pills per day and Sinemet 25/100 3 x day because they think mine is DRD. I was DX on Oct 31 2008 and i have done pretty good so far,
Freida
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Permalink Reply by bentnotbroke on -
count your blessings....
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Permalink Reply by KathyK on
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Thanks you for the reply bentnotbroke.
I do count my blessings. Everyday. I've met many with different types of dystonia and certainly those who's dystonia is more severe than mine. I know beyond a shadow of a doubt, I am one of the lucky ones.
I hang around the "dystonia boards" so I can CONTINUE TO LEARN and maybe be a voice for those who have a more mild involvement. Any type of dystonia sucks. Some of us are fortunate to not have it so bad and everyone who reads one of these sites needs to learn about the disorder but be given some hope and understanding that while there is no cure, he/she may be one of the many who can "count their blessings".
Mine may spread to all my extremities tomorrow but for the 9 years I have been diagnosed, it has not been too bad. BotoxA helped immensely when I needed it. Now, clonazepam, as needed, helps.
I count my blessings.
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Permalink Reply by KathyK on
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Why do I always feel that I have to apologize for not having severe dystonia? I am one of the hundreds of thousands who have it, severe or otherwise. Aren't we all wanting a little support and a cure?
Everyone who is diagnosed with Dystonia does not have DBS or Selective Denervation. Everyone who has Dystonia does not have to have a plethora of medications to keep their involuntary movements under control. Dystonia effects hundreds of thousands of people to varying degrees.
Years ago, when diagnosed, when I typed "Cervical Dystonia" or "spasmodic torticollis" into a Google search, I was scared to death...
All I offer is a little hope..........................
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<---------------:P someone that feels the same.
I guess we just have to remind ourselves that there are different degrees of dystonia. When I was first diagnosed with writers cramp (my first presenting symptom) I googled dystonia and I found severe generalized and cervical dystonia only. I found nothing about writers cramp.. so I ignored it.
I mean -- if it doesnt google must not be that bad- right?
Plus on top of that.. my doctor the 'lovely one' that said it would never spread.. said my writers cramp was no big deal and that I should just learn to deal with it and stop using my right hand (I'm right handed)
I was definetely more mild at that point.. and found no support whatsoever. Not even at support groups.. Who mostly had cervical and looked at me like I was an idiot for complaining about my hand....
Right now I have come to realize that dystonia is dystonia, and although each of us have unique experiences we all share a common bond of the lost of control of our muscles. We should support each other as much as possible no matter how mild our insignificant our particular type of dystonia might be...
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Permalink Reply by Lori on -
Yes that is exactly how mine happened. In 1996 for about 18 months my neck was twisted to the right. I couldn't drive and received botox and took clonazepam. Since then I have been on an off clonzepam for several years. But just as you my neck is starting to act up. I have not been to a neuro this time but I am thinking I will soon as these jerky movements really hurt. I just found this website and am new to blogging. Lori
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Permalink Reply by KathyK on
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Thank you all for the replies. Lori you and I sound like "two peas in a pod". :) I can't help but wonder why "it" has come back after about 6 years of being nearly nonexistant. I guess...just because it does. Let's just hope it doesn't get worse.
I received a comment once (not on this board) that I shouldn't blame my dear dead parents for my ST but the fact is, my ST resurfaced at the time (last Oct) when I was emotionally drained and settleing my parents' estates. I ran in "high gear" for a couple of years during their ill-health as their POA then Executrix (and simply being a daughter). I think settleing the estate/s signified that yes, they really were gone and my "duties"...the last things I could do for them...had ended. I had about 3 really frustrating weeks ( bad enough to cause me to see a neuro again) then the ST started to minimize again.
I also was on Zoloft for about a year during that time frame. Even though I have always heard it to be a "no-no med" for folks with dystonia I finally admitted that I needed some help emotionally. The Zoloft helped the depression and mood swings but perhaps Zoloft is what triggered the ST again. I'll never know and I guess it really doesn't matter.
Beka to answer your question: yes my ST is definately effected by my stress level AND lack of sleep. But for me that effect is mostly simply causing the ST to be visibly noticeable with a peculiar simultaneous chin tuck and neck twist to the right...mostly when I am using my hands such as trying to find something in my purse, slicing vegetables, etc. To others, I appear to be OK about 90% of the time. When I sit too close to the dinner table (such as in a tight booth in a restaurant) my neck acts up. But then again...eating is an action that involves the hands similar to cooking, peeling vegetables, digging in a purse. Even sitting too close to a table at a meeting is somtimes frustrating. Those who knew me when my ST was worse in 2000-2001 can see that today when I am in a "confined space" the ST kicks in and I have trouble turning my head to the left. Go figure. KathyK
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