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Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).

Me and my brain

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Unread 07-26-2011, 10:39 AM   #1
Sophiebrain
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Default Me and my brain

Hi!

Iím Sophie, 28 years old and from the North of the Netherlands. I live here with my dog Casper at edge of a small town. Maybe it is a quiet life, but definitely not normal...

In 2005 I was working at a great company, I designed playgrounds and the play-equipment that are going with it, and I loved it. In the mean while I was working myself through the last year of my Bachelor degree as an Industrial Designer.

I had great plans, hopes and ideas for the future. But it all went the other way when I got sick at the end of 2005. In a half-year I developed all kinds of neurological problems. My body didnít do what I wanted any more.

Now 5,5 year later it still doesnít do what I want and itís getting worse.

I have problems with controlling my muscles, I have spasms, tremors and cramps. This leads to pain, being very tired and thing like having troubles reading. It's like having a short-circuit in your brain. Iím super sensitive of sounds, light, movement and touch. They call it a: conversion disorder or a neurological movement disorder.

But in the meanwhile Iím just the same as any other person, with the same kind of feelings, dreams and faults. Something is wrong in my brain but Iím not crazy.
(Sometimes a bit weird and philosophical, but thatís just me!)

So why not share the things I do, think about and feel. Maybe I can meet other people this way with the same kind of problems or other interesting life stories.

Bye for now, Sophie

By the way; Sophie is not my real name, just as some other names in my blogs. This is because of privacy reasons. But my life and stories are real.
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Unread 07-26-2011, 12:13 PM   #2
btdt
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Quote:
Originally Posted by Sophiebrain View Post
Hi!

Iím Sophie, 28 years old and from the North of the Netherlands. I live here with my dog Casper at edge of a small town. Maybe it is a quiet life, but definitely not normal...

In 2005 I was working at a great company, I designed playgrounds and the play-equipment that are going with it, and I loved it. In the mean while I was working myself through the last year of my Bachelor degree as an Industrial Designer.

I had great plans, hopes and ideas for the future. But it all went the other way when I got sick at the end of 2005. In a half-year I developed all kinds of neurological problems. My body didnít do what I wanted any more.

Now 5,5 year later it still doesnít do what I want and itís getting worse.

I have problems with controlling my muscles, I have spasms, tremors and cramps. This leads to pain, being very tired and thing like having troubles reading. It's like having a short-circuit in your brain. Iím super sensitive of sounds, light, movement and touch. They call it a: conversion disorder or a neurological movement disorder.

But in the meanwhile Iím just the same as any other person, with the same kind of feelings, dreams and faults. Something is wrong in my brain but Iím not crazy.
(Sometimes a bit weird and philosophical, but thatís just me!)

So why not share the things I do, think about and feel. Maybe I can meet other people this way with the same kind of problems or other interesting life stories.

Bye for now, Sophie

By the way; Sophie is not my real name, just as some other names in my blogs. This is because of privacy reasons. But my life and stories are real.
Hi Sophi I am not a doctor but I know conversion disorder is a psych issue what you are describing sounds more like it had a medical cause. I sure hope you have a doctor that has done all the relative testing as I would hate to see you fall through the cracks when there may be some treatment that could help you.

If you have been thru this ignore my comment.
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Unread 07-28-2011, 06:05 AM   #3
momto5
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Hi Sophie. I don't have a movement disorder, but my 6 year old son does. I sure hope you can find someone who's willing to try some treatments for you. There are lots of different categories of drugs that can help movement disorders. Usually the first one to try is Levodopa (L-Dopa). If that doesn't work, there are other categories of drugs that might help (anticholinergic, benzodiazepine, MAO-B inhibitor, etc.). Are you seeing a neurologist?

If you want to connect to a community of similar people and are on Facebook, you should look up "Dystonia Friend." I can imagine how lonely and isolated you must feel. Movement disorders are so rare that you may never meet another person face to face who's going through what you are going through. Maybe you can at least connect to an active community on the Internet.
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Unread 07-29-2011, 02:11 AM   #4
Sophiebrain
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Originally Posted by momto5 View Post
Hi Sophie. I don't have a movement disorder, but my 6 year old son does. I sure hope you can find someone who's willing to try some treatments for you. There are lots of different categories of drugs that can help movement disorders. Usually the first one to try is Levodopa (L-Dopa). If that doesn't work, there are other categories of drugs that might help (anticholinergic, benzodiazepine, MAO-B inhibitor, etc.). Are you seeing a neurologist?

If you want to connect to a community of similar people and are on Facebook, you should look up "Dystonia Friend." I can imagine how lonely and isolated you must feel. Movement disorders are so rare that you may never meet another person face to face who's going through what you are going through. Maybe you can at least connect to an active community on the Internet.
Thanks for you're ideas! I'm seeing doctors and neurologists for 6 years now. Because they can't find what is exactly wrong with me, they are carefull with medication. Medication for epiliptics and especially parkinson (dopamine) seems to work. But it's hard to convince a doctor to try something new. I'm curius about L-dopa's because they work ofter simulanius with other parkinson medication.

Yes, I feel isolated. I don't fit with my diagnoses; conversion disorder, so in that group they all give the advice to go to an neurologist. So I'm in between 2 medical worlds. but I will connect myself with the group on facebook.

If you want to read anything about my medical adventures, you cvan read my blog. Just see my profile!

Bye Sophie, And say HI to your son from me!
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Unread 07-29-2011, 01:59 PM   #5
momto5
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If you're taking Parkinson's medicine, then you are probably taking L-Dopa (levodopa, frequently combined with carbidopa in the brand name Sinemet, though not sure what the name is in your country). My son also takes a medicine called Requip (or Ropinirole), which is for restless leg syndrome, but can also be used for Parkinson's and movement disorders. I don't know if you can find a doctor in your country who specializes in movement disorders, but that would be ideal. Or even a doctor who specializes in Parkinson's may be able to help. I will check out your blog too. I'll tell my son you say HI.
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Unread 07-30-2011, 05:11 AM   #6
Sophiebrain
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Originally Posted by momto5 View Post
If you're taking Parkinson's medicine, then you are probably taking L-Dopa (levodopa, frequently combined with carbidopa in the brand name Sinemet, though not sure what the name is in your country). My son also takes a medicine called Requip (or Ropinirole), which is for restless leg syndrome, but can also be used for Parkinson's and movement disorders. I don't know if you can find a doctor in your country who specializes in movement disorders, but that would be ideal. Or even a doctor who specializes in Parkinson's may be able to help. I will check out your blog too. I'll tell my son you say HI.
I'm taking a very low dosis of Pramipexsol now, that's about the same as Requip. If you go to my blog - index - medical adventures - summer 2011, you can see my adventures at a special parkisnon clinic. not a great succes for now as you can see. I haven't have time to put my compete medical history online, but i'm going to put it in my blog soon.
I hope I can get a dopamine-scan soon so we know wy the medication is working so good. My neurologist is still working on that.

In with kind of test the doctors good see that your son has a movement disorder? I'm curius if he had different tests done than I had here in the Netherlands.
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Unread 07-31-2011, 06:26 PM   #7
momto5
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He has had all kinds of test, and all of them were negative (tests included MRI, MR Spectroscopy, lumbar puncture (spinal tap), head/neck CT, metabolic panel, various blood tests, and genetic tests for specific disorders). No positive tests to point us in the direction of a specific disorder. The only thing we know is that he responds to dopamine, which means he has dopa-responsive dystonia, Parkinson's, or a dystonia-Parkinson syndrome. Really, the only way to pinpoint which one it is would be to find an exact genetic match to a specific disorder. All of the main ones that fit his symptoms have been eliminated.
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Unread 08-01-2011, 01:24 AM   #8
Sophiebrain
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Originally Posted by momto5 View Post
He has had all kinds of test, and all of them were negative (tests included MRI, MR Spectroscopy, lumbar puncture (spinal tap), head/neck CT, metabolic panel, various blood tests, and genetic tests for specific disorders). No positive tests to point us in the direction of a specific disorder. The only thing we know is that he responds to dopamine, which means he has dopa-responsive dystonia, Parkinson's, or a dystonia-Parkinson syndrome. Really, the only way to pinpoint which one it is would be to find an exact genetic match to a specific disorder. All of the main ones that fit his symptoms have been eliminated.
I don't know how old your son is. but it are a lot of tests for a child. I know they are nessecary. I had most of the same tests and some others like, EMG, EEG, tremor registration, ect. I'm waiting now for the MR Spectroscopy.
If I read his story it's like reading mine. The only clue they have with me also is the postive reaction on dopamine. Sounds familiar...

You are the first person I have found who has (your son has) the same problem. I HOPE WE CAN KEEP CONTACT! Can you tell me more what his symtoms are? If I ask to much, just tell me.
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Unread 08-03-2011, 07:47 PM   #9
momto5
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He had a couple of EEG's. I don't know about EMG, and I have never heard of tremor registration. He is 6. Symptoms are complicated. It started out as ataxia (drunk-looking walk). Then his legs became involved with muscle tightness and involuntary movement. Eventually, it began to move up his trunk and into his arms. We would see him reach for something, and his arm would overshoot or undershoot its target.

Lately, he's had a lot more trouble. When he first started taking ropinirole (requip), the pharmacy had mixed in some risperidone (risperdal) with it, unbeknownst to us. It really messed him up. Now, he not only has stiff muscles, but he also has a lot of tremors, chorea, ataxia, akathisia and choreo-athetosis type movements. Some of these seem to be related to having too much or too little dopamine. We have been trying to adjust his medications for months, but he keeps getting worse, to the point that he can barely walk for a good part of the day. His hips, legs and ankles are very tight, and he is needing both physical therapy and trigger point therapy to at least decrease the pain. I don't imagine this is very useful information for you, but I like to share what we are going through with other people who can at least relate to what it is like for him.
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Unread 08-06-2011, 11:57 AM   #10
Sophiebrain
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Originally Posted by momto5 View Post
He had a couple of EEG's. I don't know about EMG, and I have never heard of tremor registration. He is 6. Symptoms are complicated. It started out as ataxia (drunk-looking walk). Then his legs became involved with muscle tightness and involuntary movement. Eventually, it began to move up his trunk and into his arms. We would see him reach for something, and his arm would overshoot or undershoot its target.

Lately, he's had a lot more trouble. When he first started taking ropinirole (requip), the pharmacy had mixed in some risperidone (risperdal) with it, unbeknownst to us. It really messed him up. Now, he not only has stiff muscles, but he also has a lot of tremors, chorea, ataxia, akathisia and choreo-athetosis type movements. Some of these seem to be related to having too much or too little dopamine. We have been trying to adjust his medications for months, but he keeps getting worse, to the point that he can barely walk for a good part of the day. His hips, legs and ankles are very tight, and he is needing both physical therapy and trigger point therapy to at least decrease the pain. I don't imagine this is very useful information for you, but I like to share what we are going through with other people who can at least relate to what it is like for him.
tremor registration: They where especially looking at the tremors in my hands. By this kind of test a couple of students where looking a me while I did some small exercises. Like holding a heavy book before you with stretched hands. In this way they can see how bad the tremors are and what kind of tremors you have.

An EMG is a test where you can measure the speed with current go from your brain to your muscles. By making lists of the speed they can tell if you got brain damage or not. They do that by putting a very thin needle (like the once they use for acupuncture) in a muscle, clamp a wire at the needle which run to a machine. Also you have pads on for instance your wrists. Then they give you a very small electric shock on you pad and that run through your body to the needle.

of couse your information is useful. It is always good to talk or write about it. I can imagen it must be hard for him, and also for you as a parent.

I found some dystonia groups on facebook. Thanks. I hope the doctors find a answer soon!

Bye Sophie
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