Anyone who has Dystonia and is currently in remission

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Permalink Reply by beka on May 19, 2009 at 3:27pm

Hi Leeta -
I found your post and saw that no one had responded.. My apologies..I also saw that somehow this post had been locked - so unlocked it , so people can talk about remission and add their thoughts about this.

Here is what I know about remission and dystonia-
10 to 15 % of patients with cervical dystonia can go into remission- spontaneous- they wake up with it being gone..
Remission can last from weeks, to months to years.
There is no specific criteria docs use to verify if you are in remission. It is based on clinical symptoms.
Have heard that a few patients have gone into remission after Botulinum toxin doses.
Sporadic - YES !

Beka

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Permalink Reply by beka on May 19, 2009 at 3:29pm

A recent Italian study with 85 cervical dystonia patients- 4 had gone into remission.
We studied patients with cervical dystonia (CD) to determine clinical features and response to botulinum toxin A (BoNT/A). Patients were submitted to clinical, laboratory and neuroimaging evaluation. BoNT/A was injected locally in 81 patients using electromyographic guidance. Four patients who had had previous treatment were considered to be in remission. The average ages at onset of focal dystonia and segmental dystonia were greater than for generalized dystonia (p<0.0003). The severity of the abnormal head-neck movements were more severe among the patients with generalized dystonia (p<0.001). Pain in the cervical area was noted in 59 patients. It was not possible to determine the etiology of the disease in 62.3% of patients. Tardive dystonia was the most common secondary etiology. A major improvement in the motor symptoms of CD and pain was observed in patients following treatment with BoNT/A. The tardive dystonia subgroup did not respond to the treatment. Dysphagia was observed in 2.35% of the patients.

beka

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Permalink Reply by chyvonneb on May 19, 2009 at 7:49pm

Beka,

Thanks a lot for the information. I really appreciate your taking the time. Very interesting.

Leeta

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Permalink Reply by Cindyrella on July 4, 2009 at 9:57am

I have times weeks that I have no problems at all. Then out of the blue is have issues as I like to call them. However, I am curious what your idea of remission is time spa wise. That might help you get more responses.

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Permalink Reply by chyvonneb on July 5, 2009 at 11:43am

Thanks for the good suggestion, Cindyrella.

I, too, experience bouts when my symptoms are less severe than usual. It seems that some people have consistent symptoms--without much relief. Some people seem to have bouts where the symptoms/pain are lessened for a period of time and then they come back out of no where. Everyone's response/story will probably be different in that everyone's circumstances and severity of the Dystonia are different.

I have many questions that I pose--that may or may never be quite answered by doctors. I wonder if my symptoms are sometimes triggered by certain foods (I have had food intolerances, and I have intestinal issues). I wonder why some people (i.e. the former president of one of the Dystonia organizations/foundations) go into remission and some do not--maybe it is simply spontaneous for those lucky few.

Maybe we can discuss our patterns of Dystonia. Do you have bouts when you experience more relief? How long does this last? Do you think anything helps (i.e. medicine, avoidng certain foods; avoiding certain activities, etc.). As I said, I know everyone’s story/ideas will be different. I am just curious.

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Permalink Reply by ramona on July 5, 2009 at 7:50pm

You might want to start another thread, titled "Patterns of symptoms" or something like that, as few actually experience remission and that may be why there are few responses to this. ;-)

Personally, I have adult onset generalized dystonia which started 4 years ago. It was partially responsive to levadopa, but then became resistant. I had DBS in 2007 and have had many ups and downs, not being able to come off of meds. I have times when I look completely normal, but times (like now) when I have to use a wheelchair outside of the house. I have added baclofen recently and it helps, but there are times when NOTHING seems to help. This is usually after I have had "too much fun", as I call it. In other words, I have seriously overdone it... (Had company, including two little ones, for a few days, and then a big birthday party for a daughter.)

I am going to try to work on maintaining a more regular schedule with fewer times of over exertion, to see if that helps. When I do have these flare ups, they seem to last about two weeks, no matter what I do to relieve them DBS programming changes, medication changes etc). So, I will try to sit tight and wait this time...maybe...
Blessings
Ramona

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Permalink Reply by Joe on July 6, 2009 at 8:19am

I've heard that ten percent remission rate figure being bandied about ever since I acquired dystonia in 1999. I've never read a study confirming it, and I can only remember ever corresponding with one person who claimed that his dystonia was in "remission." It's my opinion that the ten percent figure is bogus...it's somewhere on the low side of 0 to 5%. If it were actually ten percent, I think we'd be hearing from a lot more people whose dystonia had remitted. You're not getting many responses because, as Ramona has already stated, it's an extremely rare phenomenon. Remission simply doesn't happen often enough to collect any data as to the conditions that coincide with its expression.

All the best,
Joe

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Permalink Reply by beka on July 9, 2009 at 1:41am

Joe - I got the 10 % number directly from Mitchell Brin, MD of Allergan.. Is bounced around in the latest medical textbooks on dystonia !

beka

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Permalink Reply by bkaren46 on July 6, 2009 at 8:38am

I have CD and I get botox injections. These injections only last about 60 days and than I am right back to square one for 30 days. Would those 60 days be considered a remission or is just that my Botox is working for those 60 days?? I think it would be that my Botox is working for those 60 days.

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Permalink Reply by Joe on July 6, 2009 at 12:33pm

hi bkaren,

When I think of remission, I envision a spontaneous occurrence with no discernible cause. As Beka put it in a previous post, you go to sleep with dystonia, you wake up without it. It's not a masking of symptoms but their disappearance...at least to some significant degree.

I'm really glad to hear that you are getting some relief at least 2/3s of the time. Like my DBS, botox temporarily suppresses symptoms. If we stop the treatment, the dystonia returns.

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Permalink Reply by bkaren46 on July 6, 2009 at 5:22pm

Hi Joe and to everyone else.
I understand what you are saying about Botox and DBS is just masking the symptoms. How long ago did you have DBS? Are you happy with the results? How has the programming been for you? If you had the choice today would you have gone through DBS ?
Thank You
Karen

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Permalink Reply by ramona on July 9, 2009 at 10:59pm

I am not Joe, but I will answer and also let him share his own experiences. I had DBS two years ago and have had very mixed results. It took me a full year to come to this conclusion, but I WOULD make the same decision again if given the choice. It has been a rollercoaster ride, particularly because I have had rough EM interference issues that are apparently "rare" (ie, no data on such issues). I was not able to but back on meds and, in fact, have recently added baclofen... I think my basic dystonia symptoms (when not relieved with neurostimulation and meds) have gotten significantly worse since the surgery, but I have no idea if that was caused by the surgery or would have happened anyway. Recently I woke with more severe symptoms than I had ever had - could not shower, get dressed, or feed myself. As it turned out, one of my neurostimulators had apparently gotten turned off by accident... It is scary to realize that I was that bad with just one of them off, though... Not sure where I would be without any neurostimulation.

I have to admit that sometimes I wonder if they missed the diagnosis and I have a more degenerative issue going on, but time will tell...

So, it is not a cure at all, but I am thankful to have the relief that I do have for now.

Blessings
Ramona

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