View Full Version : Dystonia with Associated Writer's Cramp?

01-27-2007, 01:35 PM

I have always had Fine Motor Co-Ordination Problems and did Occupational Therapy from ages four to ten (I am now sixteen). However, I am still having a few problems, so my Neurologist wants me to begin O.T. again.

I have always had problems with writing. Although my writing is excessively neat, I have a very strange pencil grip and grip my pen so hard that it leaves indentations through at least five of the following pages! I have to grip my pen this hard because otherwise, it drops out of my hand; I cannot hold my pen with the proper grip either, due to the same problem. I find writing exceptionally painful and write more slowly than one of my friends who has Dyslexia. I often do not finish examinations and tests and find this EXTREMELY upsetting. :cry: I cannot eat properly with a knife and a fork at the same time either because I need to be able to hold both my knife and my fork in my right hand. I usually eat only with a fork; I often have to ask my mother to cut meat for me and if I can, I prefer to eat with my hands because of this problem. I also grip my fork very hard and hold it in a strange way because again, it falls out of my hand if I do not. Using scissors is another problem, as my right hand tends to spasm and I have never been able to cut in a straight line.

Recently, I began to have the strangest and most painful hand spasms and would often drop my pen in the middle of my writing. My hand just seems to "conk" over to the side or attempts to fold itself over! :x I have always attributed all of this to my Fine Motor Co-Ordination problems, but my Rheumatologist sent me to have an Ultrasound Scan done of my hands and wrists to check for Arthritis and while there was no Arthritis, the Radiologist asked me about my symptoms before the scan and told me that there is a good chance that I might have Dystonia with Associated Writer's Cramp. I had never heard of this before, so he explained to me exactly what it is and it sounds very much like some of the things that I experience! He told me to discuss it with my Neurologist, as it is apparently a Neuromuscular problem.

I have never really discussed this problem much with any of my doctors because I always attributed it to my Fine Motor Co-Ordination problems, which all of my doctors know about. I would only tell them that I had writing problems, but that's it. I discussed it in more detail with my Spinal Surgeon and he told me to discuss it thoroughly with my Neurologist, but I never really did.

I may need to get a scribe for my examinations and tests now or sort something else out because I am unable to write for extended periods of time, as my hands spasm and do odd things. I must discuss this with my Neurologist, who will liase with my school and the Education Department and help to sort out my O.T.

I was just wondering, does anyone else have this problem?

Keep well! :)

01-29-2007, 12:14 PM
Bless your heart, I hope that you can get some answers on this. I know you are so busy with your school work. Can you do it on computer instead?
Now if only I could blame Lupus for my Writer's BLOCK!! I was doing so well on the book I am writing, but lately I just can't get into Raynell (my character's) world. Sigh, it'll come. it always does.

01-29-2007, 01:22 PM

Thanks, Littlered! :) I hope that this gets sorted out soon too!

I type most of my homework and I would like to be able to type my examinations and tests too, but we are waiting for the school guidance counsellor (who sorts this type of thing out) to return, as she is currently convalescing at home, due to an operation she underwent in the holidays. She will be back in mid-February, so hopefully, I will be able to sort this out then!

That sounds absolutely FANTASTIC! :D Is this the first book that you are writing? Will you publish it? I simply ADORE Creative Writing and write (or should I say type?!) whenever I can! :D I think that it's a great way to channel one's emotions! :)

Keep well and good luck on your book! :D

01-29-2007, 03:40 PM
When I taught 8th grade History, one of my students had both arms broken in a motorcycle accident. I had him tape record his answers to the homework and to the tests. He was a champ! Could you suggest this? As his teacher, I took notes while I listened to his answers, and I do believe because he "talked" them out, they were better!

The book I'm working on is historical fiction, about a girl who's growing up in the Dust Bowl (Texas Panhandle) during the Great Depression. It's great fun to write ( a LOT of research, but I, too, love History, so it's not a problem.) Raynell, the girl, and her family are as real to me as anything. It's wonderful when I can sit and escape into her world. My own world truly disappears for awhile. It isn't the first book I have written. My first was a truly awful Science Fiction book. It didn't sell well, and when I recently re-read it, I was glad! (No, I won't say the name here, because the book is truly an example of bad plot, bad everything.) This book really and truly "feels" different; When it's really flowing, it is almost writing itself!

Do think about the tape recording thing. It sure worked for my student and I! Love, Kathy

01-30-2007, 05:55 AM
Thanks SO much! :D

Wow! I'm so glad that you are enjoying your writing so much! Let me know when it gets published because I want to read it! :D

Good luck with your writing and keep well! :)

01-30-2007, 08:34 AM
Just a thought, here...
I don't know what the educational laws are like where you are, but here in the States, if you have a disability, you are entitled BY LAW to be designated "Special Needs", which means the school has to supply anything that you need in order to learn. Is it the same where you are? There are even machines that you speak into and they will "type" what you say. You do deserve whatever you need in order to get your education. Or try the tape recorder I suggested. Maybe you can get someone to "transcribe" your responses. I wish I could help! Love, Kathy

01-30-2007, 01:55 PM

Yes, as far as I'm aware, that is the law here too.

However, I went to see my Psychiatrist (I don't have a psychological problem, but I go to him to try and deal with all of the nonsense that I get from the medical profession! :wink:) today and he had met with my headmistress and my vice-headmistress a week ago because they were very concerned about my health, etc. My headmistress apparently told my Psychiatrist that if I need to organise something like this, then I must go to a special college where they can cater for my needs?! My Psychiatrist said: "But she loves her school! She doesn't want to move and she won't!"


Then, my headmistress told my Psychiatrist that she is worried that I won't finish my exams and then I will fail! Okay...

1) I am a straight-A student (Forgive me, I am not bragging, I am just trying to show you how ridiculous this is!)
2) I have NEVER failed ANYTHING in my entire life and I am not about to start now

I really don't get her! Two years ago, she was "freaking out" that I work too hard, don't have a life and need to "get out and relax more!" Now, she is "freaking out" because I am absent and she says that I'm going to miss too much work! Okay, when I'm healthy, I am doing too much work and must relax and do less. Now, I'm really ill and I must start working very, very hard! :?: :? :mad: :mad: :mad: :mad: :cry:

She tells me that I work too hard and that I mustn't worry about marks because "they really aren't everything", but she is more than happy to grab me when she needs to show someone's marks off! :mad: Now, she goes on about what type of marks she is expecting me to achieve in my final exams next year! :? :?: I just don't get this woman?! Does she think that I'm working hard and getting good marks for her? because I'm not! I'm doing it because it makes me feel happy and ful-filled and because it's what I want. Then, she says: "Do you look all of these medical conditions up on the internet? because my daughter also wanted to be a doctor when she was your age, but she certainly didn't know about all of these things!" Sigh! Now, she is sounding like my Neurologist who told me that I'm "too suggestible" and that I "read things and then my mind creates them!" Well, my Psychiatrist put him right! :lol: :wink:

My Specialist Physician is like that too. She had a "freak accident" the other day because I know all of the main chemicals in the anti-epileptic drugs and she couldn't remember the main chemical in mine! That's not exactly my problem, is it? Then, she goes and writes on my report: "A very excitable girl with too much medical knowledge from reading too many medical journals"! WHAT?! :roll: :lol: My Psychiatrist, my Paediatrician/Paediatric Cardiologist and my Urologist laughed their heads off at this! My Urologist loves to tease me about it! He just said: "Well, I must be honest, you are more comfortable with medical terms than most people your age!", but now, everytime I say "kidney stones", he corrects me with "urinary calculi" or when I say "urinate", he corrects me with "micturate" and then we both just "pack up" laughing! :lol: :wink:

I am SO sick and tired of this, though! Are all of us patients supposed to be stupid?! :mad: We have EVERY right to access the information that they have, so you know what? They must just deal with it! I mean, GEES! They should be happy that their patient's are actually taking such an interest in their own health! My Psychiatrist actually encourages me to look things up, he doesn't care! :lol: My Rheumatologist is the same: he gave me a whole lot of brochures on S.L.E. and Fibromyalgia!

I'm sorry for venting and that this is so long, but I had to get my frustration out somewhere!

Keep well! :)

01-31-2007, 07:19 AM
sometimes I think docs just don't like it when we have knowlege...like THEY own the knowlege. I am off to the doc soon, and BOY is HE gonna get an earful. Yes, he might have the MD degree, but I bet I know almost as much as he does about my disease, and I darn sure know MY OWN BODY better than he ever will.
wish me luck, I am NOT going to raise my voice, but he is gonna GET IT FROM ME!
As far as your headmistress goes...maybe she was intimidated by talking to a "professional"....that's the only excuse I can think of. Maybe remind her about the law that says they MUST accomodate your needs. Love, Kathy

01-31-2007, 07:40 AM

Thanks, Littlered. :)

My Psychiatrist also suggested that my Neurologist may have been "acting funny" with my mother and I recently because he's not really sure exactly what's going on, but doesn't want to say "I don't know." I can understand that in a way because he's C*um Laude and is apparently one of the best Neurologists in the world, but still, I just wish that he would understand that I honestly won't think any less of him if he said "I don't know." Infact, I would think more of him for being honest.

Sigh! Plus, I found out on Thursday last week that my headmistress goes to see the same Neurologist! :shock: She asked me if I would like her to talk to him, but I said: "No, thank you. Don't worry, I'll sort it out with him when I see him again." It sounds like she already spoke to him though, but I'm certainly going to check this out because it's illegal for any doctor to talk to a teacher without the parents' permission and my mother certainly was not asked and neither was I! :mad: I'm sure that my Neurologist would not have talked to her, without asking my mother's permission first, though. However, if my headmistress spoke to him, both my mother and I will be VERY angry! :mad: Not because we are worried about what he will say; it's just a matter of etiquette and privacy, which must be respected, no matter what my age is!

Good luck with the doctor and show him what you're made of! We have a right to complain, if we are not satisfied with something!

Keep well! :)