Can anyone HELP me. My Catch 22 - Paroxysmal dystonia
HI
I've written before that I strongly believe that I have Paroxysmal dystonia, but that the Neuro I had, won't even consider it.
I am fortunate the my physio therapist is ordering further testing. In fact she mentioned it at my last
appt again and said it was in the works.
As I become stronger with the physio I am can do a physical task longer than before.
My Catch 22. I am lucky to be able to push myself more physically. I worked hard yesterday trying to decorate the Christmas tree. It will take me awhile, so I started it now.
Though I can work harder now, it brings on movement episodes.
Yesterdays lasted 2 hours. It feels like I just can't win. I feel like there is no reward for me at the end of all my work.
THE HELP, I am asking for is this.... How do I tell the new Neuro about my movements so that he will listen to me.
ARE THERE ANY MEDS, that I should know about. That I could take when these movements start.
Thanks, Elaine
I've written before that I strongly believe that I have Paroxysmal dystonia, but that the Neuro I had, won't even consider it.
I am fortunate the my physio therapist is ordering further testing. In fact she mentioned it at my last
appt again and said it was in the works.
As I become stronger with the physio I am can do a physical task longer than before.
My Catch 22. I am lucky to be able to push myself more physically. I worked hard yesterday trying to decorate the Christmas tree. It will take me awhile, so I started it now.
Though I can work harder now, it brings on movement episodes.
Yesterdays lasted 2 hours. It feels like I just can't win. I feel like there is no reward for me at the end of all my work.
THE HELP, I am asking for is this.... How do I tell the new Neuro about my movements so that he will listen to me.
ARE THERE ANY MEDS, that I should know about. That I could take when these movements start.
Thanks, Elaine
Replies to This Discussion
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Permalink Reply by Elaine on -
Beka,
Yes mostly my right arm. Sometimes my right side of my neck.
My left arm has a mild tremor.
I have been in so much pain and loss of muscle strength that I rested a lot. So had less episodes.
Now I am going to physio, forcing myself to walk within the house and gaining back some strength.
This is physically strenuous for me so brings more movements on.
At physio she keeps me on a over sized bed. Keeps a buzzer beside me. She is afraid to do
anything with my arms, because no one will say what they should do.
She is only having me do leg exercises. 1 set of 10 on each leg. I usually get to the 3rd exercise and cannot do a full set of 10 because that's when the arm movements start.
So she stops the sessions. I have said that I'm willing to continue. But she won't.
She is afraid that either I will hurt myself or they will be held liable.
So I REALLY NEED a firm dx , if not for the movements, than for how it affects the rest of my life.
I feel dumb for saying....but I can't understand a lot of the language in the article above.
I'm going to copy it and read it quietly to myself. Maybe I'll get it. lol
I do understand what you are saying though. THANKS for thinking of me.
Elaine
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Permalink Reply by Elaine on
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BEKA,
Ok, I read it again. Got my husband to read it with me too. lol
What he says he thinks the article means (me too) is that it's more from my muscles than
from my brain?
That touching my arms, electrical shock, exertion will bring on the episodes?
Which is what happens.
I had absolutely NO testing involving muscles. NONE.
This is what the physio therapist wanted to have done.
If I can get the proper testing and a dx....I'll be SO GRATEFUL to everyone.
I'm grateful anyway....but I'd be even more grateful. : ) lol
THANK you all so much.
Elaine
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Permalink Reply by Elaine on
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SORRY LONG POST....
EXCERPTS FROM MY MOVEMENT DISORDER REPORT.
I asked for copies of these today from my GP.
The Neuro who was "treating" me....did not write much of a report. So not much to write. He pretty much
relied on his "second opinion" Neuro in the same office. If his is letter were not double spaced, it wouldn't have filled a page.
FIRST MISTAKE in report that I feel matters as it says that I was in poor health. "....gift basket business from her home. She stopped 4 years ago because of her health."
I DID NOT.....I had my tax # taken away because I was considered inactive....as I was caring for my daughter's health.
Without a tax # , I could not continue with the business.
He wrote "I asked her to specify when she last felt well and this was very difficult for her to specify"
I DID specify! He wouldn't accept my explanation as me feeling well. He tried to take it back years until he could say "A HAH...you didn't feel well for years!!"
Another quote "The movements of the right arm progressed to become more significant with dystonic flexion of the elbow pulling the hand toward the shoulder and then the elbow toward her ear with her neck tightening twisted into hyperextended position".
This next comment really annoys me!! I need glasses badly and said I needed glasses. "Under lighting was no different , she started to squint as soon as I tried to examine her eyes."
BECAUSE I can't seen ANYTHING when it's put up close to me.....like MOST people my age who don't get their glasses.
"The features as described above are consistent with a probable psychogenic movement disorder. The paroxysmal nature of the movement, the resolution with Vit D , the marked distractability and the coactivation features on exam support this. I do not know of any other neurologicial disorder that would present with similar movements.
He even says "Paroxysmal".....
VIT D - not true....
The Neuro asked ....the sequence of events that lead up to seeing a Neuro. MY GP put me on a low dose of Vit D and didn't do anything else with me. It had NOTHING to do with my movements and I never said that it did.
As is typical of the case, she does not feel stressed as her limbic system seems to have dealth with the issues in this pathologic way."
There's the kicker......I don't feel stress....so my mind is taking it over for me!!
"I also indicated to her that diagnosing a pyschogenic movement disorder of the right arm does not exclude the possibility of some other medical problem causing some of her other symptoms, however I did try to focus in on the reason that I was asked to see her."
THIS IS BECAUSE I had asked isn't it premature to make a pyshogenic dx when I had other conditions pending.
He said NO.
He also implies that I indicated I had pain, but contradicted myself by getting onto the exam table. And that my husband rushed to my aid. NOW if you knew my husband.....he is not one to coddle anyone unless he truly believes they need it.
The movement the Neuro explained as to how I got onto the table is exactly how it is. I can lift one leg, which helps the other up. But only if I do it on that side.
Since seeing the Neuro I was dxed by an Endocrinologist, with severe Vit D Deficiency and take 50,000 units of prescription Vit a week. She said possibly for life.
Also have seen a Rheumatolgsit who says he is likely dxing Fibro....which he says is causing my fatigue and pain.
I saw my GP today to refill prescriptions. I over did it today....I have had 4 bad movement episodes today. One being in her office. She listened to me. But said there's no treatment anyway.
I tried to explain the tests that Beka mentioned...but I didn't do a good job of it.
Whoever reads this....THANKS for taking the time. I'm sorry it was so long.
Elaine
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