Can anyone HELP me. My Catch 22 - Paroxysmal dystonia

[Elaine]

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

[Elaine]

I guess no one has any answers for me?

I've been going to physio for a few weeks now. Almost every time she has to stop my session because it brings
on the dystonia. Then I have big episodes at home.

This HAS to happen to other people too? It can't be just me.

I'm not being treated for this in any way at all. No meds. No physio for the movements....because the Neuro didn't specify anything.
So I'm pretty much stuck!
I can't find anyone in the same situation as me.
Elaine

[kdorff]

I don't know that this helps, but...
In addition to getting "stuck" in positions I also go through periods where I move a lot. They don't look like standard dystonic tremors or a dystonic storm. (In fact, they look irregular enough that everyone is reluctant to label what I have as dystonia, so this may be irrelevant to what you experience.) Their intensity really varies, and I still don't really understand the pattern. One thing I have noticed is that often they are set off by activities that force me to be in "normal" positions.

For example, dystonia tends to force me to hunch forward a lot. If I were to try and sit on my couch and watch tv like a normal person, frequently I can't sit still. In contrast, if I were to put a laptop on my lap and a little to the right, so that I'm looking down at its screen, I can watch the same thing without as many problems. Similarly, meals at the table tend to get me moving as I try to look out at the table and the people with whom I'm eating. (I jokingly refer to these as my "zero calorie meals" since I figure I must expend almost as many calories moving around as I intake in my meal!)

I mention this because physical therapy really set off a lot of these movements, since trying to get me in a more normal position was one of the stated goals of the sessions. I don't have any magic answers, but understanding a little more about what triggers them helped. I now know that I have almost no tolerances for a lot of the typical stretches recommended for dystonia patients. I find that I can get away with (and even benefit from) a few stretches if I am incredibly consistent about doing the same thing every day, whether or not I am meeting with the therapist. For example, a physical therapist was able to teach me to relax some of my neck muscles to the point that I could sit relatively straight and still for a short period of time. I wasn't able to push that any farther by trying something like what is on page 9 of bleton. (See here.) I find that a lot of the movement in my legs gets worse as my calf muscles tighten, but since my legs seem more tolerant of stretching, I've been able to improve my gate a lot by using PT exercises to stretch out the involved muscles.

Anyway, I have no idea if this helps or is in any way reminiscent of what is going on with you. Dystonia has such a range of symptoms that I guess our experiences are all distinct. I hope you find something that helps.
-Kat

[Rebekah]

Well, I just spent a long time replying, only to push the wrong button and lose it all.

Remember, that although your neuro works for you, he's also a human being. If you've already told him about the movements and he isn't convinced it's what you think it is, he has his considered reasons. So, instead of reiterating old symptoms, ask your neuro to clarify your diagnosis.

Ask him what are the usual treatments for such a diagnosis. If you hear something new, ask him to try it. If you don't hear anything new, let him know about your concerns and ask if he has any suggestions, if only to treat symptoms or improve your quality of life.

Are you taking any 'elephant killers', like ativan? You may still feel the movements under the drug, but they definitely relax the muscles and can help you rest. It might help to avoid storms.

[Elaine]

The Neuro closed my file and I don't have a Neuro right now.
That was after a total of 3 appts.

So I'm stuck.

I misunderstood what the phsyo therapist was planning. I thought she was sending me to a new Neuro.
Rather she's having me evaluated within the Rehabilitation Hospital by a group that deals with people who
have had strokes and other conditions like that.
So I'm feeling upset today.
Maybe I shouldn't be upset....maybe they will send me some where else.

I'm on a very strong pain med. An opiud. (sp?). Dilaudud. for pain, supposedly from Fibro...still waiting for that appt...Dec 15th.

I just got a call today that I'm to go to a sleep clinic next week. I NEVER complained about sleep problems.
I have RLS and insomnia....but I barely snore. I don't feel like I can't breath.
I never asked to go to a sleep clinic.
I'm a light sleeper and have always been since I was a teen. I've been to a sleep clinic , but 10 years ago and they said I DON'T have sleep apnea.

I want appts that I really need. Not ones that my GP is pulling out of her butt.

Elaine
PS - Thanks for responding. : ) Sorry for being such a misery today.

[Rebekah]

I don't think you're being a misery.
Sounds like now is a good time for you to back up and ask yourself what your bare bones requirements are.
You want to see a neuro for what?
If you believe you have P.D., there is no treatment for it. There isn't really a treatment for any of the dystonias.
You're already getting PT, are taking some management meds... Other than that, there isn't much to be done, aside from adjusting your life to fit your needs and finding the sunshine in your own world.
Feel better, Elaine.
Hugs from here.

[Elaine]

Hi Rebekah,
Thanks for your nice post. : )
What I want is for the "psychogenic" dx to go away.
I want a new Neuro who can see me fresh. With no predisposed ideas.

I'm not on any meds for movement.
I'm on meds for fibro.
I'm not receiving any treatment for the movements.
And the physio therapist doesn't know what to do with me.

The more physio, the more episodes.
We went for our H1N1 shots yesterday and I had an episode in the waiting area after
the shot. Put a scare into the nurses.
But we were allowed to go to a special clinic for disabled people....so the scare didn't last
too long. lol

Sounds silly.....but I want to confidently say I have P.D. Without it feeling like I'm lying.
Elaine

[beka]

I have to think about your situation abit more, Elaine. You are not alone.
let's try to digest your symptoms.

beka

[Rebekah]

oh boy do i know what you mean! it's really frustrating when you are waiting on that certificate of authenticity. I went a lifetime with zero treatment, and i'm not too far from it now. The drugs prescribed to people with dystonia range from anti-anxiety & depression meds, to seizure medications and heavy pain killers. They also prescribe fibro meds.
All the years I took pt it was for Fibro (which i have) or 'unspecified arthritis' (which i don't have). When, after 30 years of having a tight body I was given baclofen (just this year) I thought the world would change, because I had a tiny release. It didn't do much of anything besides that and does nothing for the movements.
Unfortunatley, you're not the only one who is not being treated. In fact, a few weeks ago, the DO who was seeing me for free spontaneously switched the dx to 'funtional' with no evidence of any kind. He told me he didn't care about the neuropsychiatrists opinion... So...
In this Dystonia universe, it is a heart healthy idea to climb away from evaluating self based on the misinfomed whims of the medical establishment. There are so many caring, great people, but we cannot allow them to hold the reins.
Treatment for Dystonia is based around management... What can be done to improve your quality of life? Have a med you wanna try? Request it.
Be confident, Elaine. This is your world, your experience, your life. Seize the joy. Find another paradigm in which to work. Your body is sure of what it has. Just choose to believe it.

[Rebekah]

and whatever you do, don't underestimate the gift of familial support. many of us do NOT have it. it is one thing to be misdiagnosed by strangers and another to be disparraged by lovedones.

[marie]

dear elaine and beka and all-i m in the same frustrating position and i feel if i had a knowlegable neurologist on board i would have better management.i read the article in the dystonia magazine where a man was labled psychogenic and he had a functional mri which showed activity in a part of his brain that would respond to psychiatric meds.i feel all testing and help has stopped and put into the hands of a psychiatrist that doesnt exist.isnt their an awfully fine line between psych. and neuro.what if all of us converged on the medical community with our plethora of movements and demanded better...marie

[Rebekah]

Would be nice. I would like to see consistent diagnostic criteria.
I think if we push together in significant numbers we will see real change.
I saw a social security neuro who said I need to see an MDS. I totally agree, but haven't the slightest idea how to see one with no money. :)

[marie]

dear rebecka-o.t.but soc.sec. might have to pay.i would like to revisit the idea of whether us mystery folks shoud be getting a functional mri and if the test shows an anomoly,why woould it be psychiatric depending on where the abnormal activity is.i want treatment ,not a condecending remark like wouldnt you like to have your old life back,no s... sherlock.yet i have to be nice.aghhhhhhh.marie