Me and my brain
 

Hi!

I’m 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 didn’t do what I wanted any more.

Now 5,5 year later it still doesn’t do what I want and it’s 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. I’m super sensitive of sounds, light, movement and touch. They call it a: conversion disorder or a neurological movement disorder.

But in the meanwhile I’m just the same as any other person, with the same kind of feelings, dreams and faults. Something is wrong in my brain but I’m not crazy.
(Sometimes a bit weird and philosophical, but that’s 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.

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! ;)

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.

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.

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

Hi Sophie,

I have been wanting to say 'hello' and encourage you in your daily struggles and hopes for the future, but have just been reading the posts on here for a while.
I also have a movement disorder, Parkinson's disease. I remember when I first noticed a slight tremor when I was about 34 yrs old. That was over 9 yrs ago, and since that first tremor, I can remember having some other not-so-obvious symptoms that started in my 20's.
I feel I can relate to you in that I also consider myself a little weird and philisofical. I simply call this being "quirky". In the dictionary it is defined as:

Adj. 1. quirky - informal terms; strikingly unconventional
far-out, offbeat, way-out, kinky
unconventional - not conventional or conformist; "unconventional life styles"

I like to think I am a non-conformist, but off-beat probably defines me better.

The reason I wanted to reply to your post was to encourage you to not give up on your plans, hopes, and ideas for the future. Hold on to them and if you have to, take baby steps towards those plans. This disorder you have might be hard to live with and even limit your abilities and mobility, but you can work around these challenges within reason. You can still accomplish what you set out to do 5 years ago. Don't give up on your dreams. Sometimes, when it gets rough, hope is the only thing we can cling to. So, have hope in a bright future and keep making plans.


My best to you,
Tonya:)

Hope and kids
 

Hi Tonya,

Thank you for your support. I don't give up hope, but I do try to be realistic. I don't want to live every day with my mind in the future instat of today.
My doctors have told me I won't recover and I don't have to expect to go back to work again.

But as you can read in my blog; sophiebrain.wordpress.com, There is hope now. I'm on parkinson medication, but the doctors don't understand why it works. It they can prove I have a dopamine problem it will be easier for me to get new and more medication. Now I'm on a very low dosis, because they don't like experimenting. But maybe in a few months.....

I would like a personal question, if thats not a problem. I seen you have childeren. I'm told that parkinson medication and having childeren is not good for the unborn child. Where you of you medication while you where pregant? I don't have plan to get a child myself (first I have to find myself a husband ;) ). But I get more and more the feeling that that door is closing for me.

Bye Sophie

Hi Sophie,

I do understand and admire your attitude about being realistic and not concentrating on the future. I read a lot of your blog, and have a better understanding of what you are experiencing. If the Parkinson's meds seem to be working, then it seems likely you have some form of PD. But, the brain is so complex and there's a wide range of neurological diseases/disorders with each person having not exactly the same symptoms as the next. I know from reading many forum posts that no two people are alike in all their symptoms with Parkinson's.

I do hope you will get answers soon. The doctors you have seem to be very attentive and committed to diagnosing you. I feel confident they will get to the bottom of it. Thankfully, there are some very good medications available to help with the symptoms that cause us so much distress.

I don't mind you asking me questions. If I'm able to help in any way, I would be glad to do it. Unfortunately, I can't help you with personal experience regarding pregnancy and PD meds. My second child was 3 years old when I first noticed the tremor in my hand. But, I did some research(as you probably already have) and one website said it wasn't good to take carbidopa/levodopa while pregnant. Mostly, they just advise people to talk to their doctor if trying to become pregnant or are pregnant. I would think that if a person wanted to become pregnant they could ease off the meds. and hopefully do without them until the baby is born. Natural meds/herbs could be taken in place of these, hopefully. All would have to be approved by the doctor, of course. Something to think on until you do find that husband.:)

Your blog is very good, Sophie. And, it is a good source of information to help those going through the same or similar experiences as you. You have a way with writing and your attitude is amazing. I'll keep checking in on it for new updates. Glad you are here for friendship and help.

Thanks for sharing,
Tonya

Thanks Tonya. I learn a lot from all the people I meet online, now I don't feel so alone anymore. If you have any advice about PD or my blog, just let me know.

Bye Sophie

I'm glad you don't feel like you're all alone in this. There are many out there, and on here, who want to either help or who need that same support.

I'm not so good at giving advice. I would simply say to take one day at a time and if you ever feel you are depressed or are unable to cope with it all, seek help as soon as possible.
But, you seem to have a good, clear head on your shoulders. Keep blogging! That seems to be good therapy. I like your attitude. :)

Tonya

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