a response to Karen
Hello Karen,
First of all, everyone on this board (dystonia or not) can relate to all that you have written about below and are so sorry that you have been afflicted with this torturous and confusing disease known as dystonia. I can honestly tell you that after a year of reading everyone's postings here, I have noticed that everyone has a lot of various symptoms that are seemingly unexplainable and unrelated. That's what the horror of dystonia is, you feel so alone and helpless even though you're being treated by so many specialists and amongst people that share and don't share your symptoms. A hard lesson for me was that you (and they) never really know what's for sure. I really wish I or someone else could save you the ordeal of what this is about.
On that note, there is a specific type of neurologist that you should probably see, a specialist who knows more about dystonia than the average neurologist, to get an accurate diagnosis of dystonia. These are called 'movement disorder specialists' and should know more about the signs and symptoms of dystonia. I would ask your current neurologist if they could refer you to one, and if you can't find one that way then do some searching for a neurologist that specializes in Parkinson's disease. The best thing you can do for yourself to find the right treatment is to get a correct and complete diagnosis. It took me 3 neurologists before finally getting one that said what I had was dystonia with confidence. Through extensive tests they ruled everything out. A blood test and MRI showed no brain damage or noticable abnormalities leaving only the demon, dystonia. And yes, I thought myself crazy and went to a Psychiatrist and Psychologist too. One said it was a possibility of a tic disorder, the other said conversion disorder. Karen, you're not crazy. If your body is doing something that you're not telling it to do, then you have a movement disorder.
From what you describe below, the odd movements and the pain, your description sounds like dystonia. I have spasmodic torticollis, also known as cervical dystonia. At it's worst, my dystonia was so bad that I couldn't eat or swallow my food, couldn't walk, couldn't read, couldn't do much more than lie in bed (and even that was a challenge) When it started, I would have these strange odd spasms/jerks of movement in my neck. You could see the large neck muscles pulsate as this occured and the constant jerking would cause a lot of pain in my neck and back. From August to November it started, quieted down in December, and then was at it's Hell-worst in February and May. I think the average onset of dystonia is 5 years. When I finally went in to see a movement disorder specialist, my head was completely out of control. I wasn't actively thinking of making the movements, but you could clearly see that the muscles were flexed and strained and no matter how much physical force was exerted to hold my head back still nothing could be done. These movements weren't reflex movements, could not be stimulated or controlled, and for the most part did not involve any kind of conscious thought on my part. Sometimes, but not often, the dystonia would let up and I'd get a moment to breathe... mostly in the morning. Anxiety and stress plays a major role in my symptoms. Everyone here will tell you to try to calm yourself as much as possible. It used to piss me off so much when doctors and people would say "relax" to me, "I can't relax when I'm in so much pain and when I can't control my movements." I'm much better now, not perfect... not ever perfect... but I've somehow learned to be a more calmed person.
Here's a short video of spasmodic torticollis
http://www.spasmodictorticollis.org/video/VNR.mov
I went throught the gamut of an exhaustive search of medications (I honestly think there's close to nothing left to try) of Parkinson's disease and Tourette's disorder drugs: Drugs for dopamine, for anxiety, for pain... muscle relaxers, and brain drugs, and antidepressants. Some had no effect at all. Others would give me a week's hope that I was someway getting better. And then there were the side effects: Headaches and sleepless nights, depression and panic attacks, pain and sickness, enhanced sensory experiences, weakness and sometimes even worsened dystonia. While I would never try most of these drugs again, I'm honestly glad that I tried all of them... I hear that some of these work for some people some of the time. Today, I take 2 drugs daily and get a regimen of botox shots in my neck every 3 months. And by the way, I've never taken or heard the drugs you mention.
I didn't leave the house for the better part of a year. I avoided my family and friends, chose to suffer a lot alone, and felt trapped by dystonia. But through the help of drug and botox treatments, the gentle understanding of my family and friends, and a thorough grieving and acceptance process, I've been able to move on a little bit. I contacted my boss 2 weeks ago after not having worked for 13 months. I haven't heard back yet (but expect to soon) and am guessing that I won't have a job to return too and will need to find something more accomodating. However, that insecurity is nothing compared to the pain and suffering that I went through back in February. In my grief, I was ready to die. Today, I just have to find a way to live. Just recently I was able to go to a beach and reflect on how amazing it was that I was able to experience the sight of an ocean again. I hope that you are able to find some, any, relief and experience that feeling I had looking upon the horizon and feeling the sand between my toes and thanking God for another chance to live again.
Please do not hesitate to ask questions. We are here to answer.
With hope,
RJ
California, USA
First of all, everyone on this board (dystonia or not) can relate to all that you have written about below and are so sorry that you have been afflicted with this torturous and confusing disease known as dystonia. I can honestly tell you that after a year of reading everyone's postings here, I have noticed that everyone has a lot of various symptoms that are seemingly unexplainable and unrelated. That's what the horror of dystonia is, you feel so alone and helpless even though you're being treated by so many specialists and amongst people that share and don't share your symptoms. A hard lesson for me was that you (and they) never really know what's for sure. I really wish I or someone else could save you the ordeal of what this is about.
On that note, there is a specific type of neurologist that you should probably see, a specialist who knows more about dystonia than the average neurologist, to get an accurate diagnosis of dystonia. These are called 'movement disorder specialists' and should know more about the signs and symptoms of dystonia. I would ask your current neurologist if they could refer you to one, and if you can't find one that way then do some searching for a neurologist that specializes in Parkinson's disease. The best thing you can do for yourself to find the right treatment is to get a correct and complete diagnosis. It took me 3 neurologists before finally getting one that said what I had was dystonia with confidence. Through extensive tests they ruled everything out. A blood test and MRI showed no brain damage or noticable abnormalities leaving only the demon, dystonia. And yes, I thought myself crazy and went to a Psychiatrist and Psychologist too. One said it was a possibility of a tic disorder, the other said conversion disorder. Karen, you're not crazy. If your body is doing something that you're not telling it to do, then you have a movement disorder.
From what you describe below, the odd movements and the pain, your description sounds like dystonia. I have spasmodic torticollis, also known as cervical dystonia. At it's worst, my dystonia was so bad that I couldn't eat or swallow my food, couldn't walk, couldn't read, couldn't do much more than lie in bed (and even that was a challenge) When it started, I would have these strange odd spasms/jerks of movement in my neck. You could see the large neck muscles pulsate as this occured and the constant jerking would cause a lot of pain in my neck and back. From August to November it started, quieted down in December, and then was at it's Hell-worst in February and May. I think the average onset of dystonia is 5 years. When I finally went in to see a movement disorder specialist, my head was completely out of control. I wasn't actively thinking of making the movements, but you could clearly see that the muscles were flexed and strained and no matter how much physical force was exerted to hold my head back still nothing could be done. These movements weren't reflex movements, could not be stimulated or controlled, and for the most part did not involve any kind of conscious thought on my part. Sometimes, but not often, the dystonia would let up and I'd get a moment to breathe... mostly in the morning. Anxiety and stress plays a major role in my symptoms. Everyone here will tell you to try to calm yourself as much as possible. It used to piss me off so much when doctors and people would say "relax" to me, "I can't relax when I'm in so much pain and when I can't control my movements." I'm much better now, not perfect... not ever perfect... but I've somehow learned to be a more calmed person.
Here's a short video of spasmodic torticollis
http://www.spasmodictorticollis.org/video/VNR.mov
I went throught the gamut of an exhaustive search of medications (I honestly think there's close to nothing left to try) of Parkinson's disease and Tourette's disorder drugs: Drugs for dopamine, for anxiety, for pain... muscle relaxers, and brain drugs, and antidepressants. Some had no effect at all. Others would give me a week's hope that I was someway getting better. And then there were the side effects: Headaches and sleepless nights, depression and panic attacks, pain and sickness, enhanced sensory experiences, weakness and sometimes even worsened dystonia. While I would never try most of these drugs again, I'm honestly glad that I tried all of them... I hear that some of these work for some people some of the time. Today, I take 2 drugs daily and get a regimen of botox shots in my neck every 3 months. And by the way, I've never taken or heard the drugs you mention.
I didn't leave the house for the better part of a year. I avoided my family and friends, chose to suffer a lot alone, and felt trapped by dystonia. But through the help of drug and botox treatments, the gentle understanding of my family and friends, and a thorough grieving and acceptance process, I've been able to move on a little bit. I contacted my boss 2 weeks ago after not having worked for 13 months. I haven't heard back yet (but expect to soon) and am guessing that I won't have a job to return too and will need to find something more accomodating. However, that insecurity is nothing compared to the pain and suffering that I went through back in February. In my grief, I was ready to die. Today, I just have to find a way to live. Just recently I was able to go to a beach and reflect on how amazing it was that I was able to experience the sight of an ocean again. I hope that you are able to find some, any, relief and experience that feeling I had looking upon the horizon and feeling the sand between my toes and thanking God for another chance to live again.
Please do not hesitate to ask questions. We are here to answer.
With hope,
RJ
California, USA
posted by RJ at 4:04 AM
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