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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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Join Date: Jul 2011
Location: the Netherlands
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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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Quote:
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 12-20-2011, 01:20 AM   #7
Luvhealth222
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Default My daughter is suffering too with no help from drs

Hi Sophie sorry for your symptoms and change of mental strength, my daughter has been declining as well with no definate diagnosis by drs. If you have any similiar symptoms please let me know any help from other sufferers would mean alot to put these pieces together hopefully.
My daughter a previous healthy strong vibrant girl started complaining of sudden symptoms she is know 26 and they started when she was 24.
For the past 2 years sudden symptoms she begun and continued to progress and decline with no firm diagnosis. It began with severe fatigue and slight depression suddenly for no reason or change in lifestyle pace. She the complained she started to feel stiffened and slowed movements with troubleintiating movements. Thenstiffness hit her neck and was worse than any stiff neck she ever had during a flu. This lasted for 1 year and half. The drs did blood work extensively including Lyme disease and autoimmune diseases like lupus or MS and MRI of brain neck and spine and ct scans with contrast but all were normal.
Then her vision started to get blurry which she wasn't alarmed because She has had migraine history with vision auras that are genetic from her fathers side but never caused her more then pain during episodesand vision loss. But these vision changes were more doubling with heavy weakened eyelids that were difficult to keep open and focusing problems, this forced her to take a leave from her career. Then the last stage currently was neurological symptoms thatnhave changed her persinality and seems mild dementia is beginning. Having trouble with memory, slowly getting confused in familiar places and struggling to recognize people and objects she is complaining severly about. The drs have reassess and redid the MRI if brain neck and spine and EEG with more blood work and a nueropsch test for memory with reasoning questions, She scored average which to me wasn't impressive for a honor graduate in from ivey league college. She has severe bouts with dizziness making walking very hard because she is very off balance and can't stand straight for long. She has just had a VNG test which the dr said has confirmed dizziness from her brain not her ears or eyes.
I really don't know where to go from here she is now having psychosis it seems. Shes having hallucinations and keeps sayins she doesn't feel real, and having sever nightmares. Her speech is becoming off and personality very isolated. This is a completely different girl and I'm very worried, some type of medical illness the drs have diagnosed yet is causing sever psychosis. We have a movement disorder dr we are going to next and dont know where to go from there. Her career thatnshe worked so hard for took has a huge loss. She has never traveled out of country and need advice on how to get answers from this point. *I'm so confused and discouraged. It seems to have begun with physical symptoms and has developed into deteriorating neurological symptoms. Could a movement disorder cause dementia so young? Thanks

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.
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