Movement disorder

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Movement disorder


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Old 11-07-2013, 09:28   #1
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Default Movement disorder

Saw my primary care guy yesterday.

Very smart doc, willing to investigate not just run tests.

My movement disorder which, at its worst, looks a lot like Huntingtons, has been difficult to diagnose and treat. It was this doc who put me on Baclofen a drug generally used for MS flare-ups (which I do not appear to have) that generally stops the movements, at least for awhile.

He went into a lengthy discussion of nerve synapses, receptors, etc. and expressed his belief that the cause of my movements was the result of an autoimmune process damaging receptors in the part of my brain controlling movement. Apparently over periods of time, the receptors become insensitive and no longer respond correctly resulting in out-of control movement.

The "cure" would be steroids which I cannot take because of the glucose issues. Said he'd recommend certain chemo treatments, but was hesitant to do so without further knowledge.

Meanwhile, I get to go off Primidone and lorazepam slowly but must keep the Baclofen, perhaps a patch.

The really great news is that he concurs that the problem is not psychogenic! Can't tell you how many docs have looked at me sorrowfully while telling me to see a shrink!

I'm married to a shrink, for heavens sake, and am very well aware of the conditions that respond to therapy. This ain't one.

I remain vaguely proud to be a medical anomaly.

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Old 11-07-2013, 09:42   #2
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Delighted that you've got a smart doc! Best Thoughts winging your way ...


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Old 11-07-2013, 12:53   #3
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I take it you have not been on any of those fun psych drugs that cause extrapyramidal symptoms?

My neighbor went through an episode of that after going off her meds ... and it has now disappeared. I am sure she got the psychogenic song and dance too.

Hope you can get past it as well -- and GLAD you refused steroids!

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Old 11-07-2013, 13:41   #4
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So happy you have such a discerning doctor, Mr. Medical Anomaly. Love & prayers.




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Old 11-08-2013, 09:11   #5
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No, Foxl, no tardive dyskinesia, but I've had the tiniest tremor in my hands and slight head rolling for as long as I can remember.

All of your kind wishes and prayer have been heard - it's barely noticeable now, hopefully gone for good.

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Old 11-08-2013, 09:24   #6
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Glad its getting better Tamagno.

I hope it disappears for good.

Best, blessings & light
T.

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Old 11-08-2013, 12:46   #7
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I know it is rare, but I have a friend recently diagnosed with Wilson's disease. Copper excretion problem. Causes neuro symptoms, and took him quite some time to get a dx. NO family history. :-( Might look it up?

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Old 11-09-2013, 01:31   #8
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That dr is definitely a keeper!! Prayers and healing energy coming your way.

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Old 11-09-2013, 09:16   #9
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Quote:
Originally Posted by foxl View Post
I know it is rare, but I have a friend recently diagnosed with Wilson's disease. Copper excretion problem. Causes neuro symptoms, and took him quite some time to get a dx. NO family history. :-( Might look it up?
Thanks! I'll look into it...

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Old 11-11-2013, 21:35   #10
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I do have MS which has spasms. Baclofen does nothing for me but Flxeral does. I am also on Nuerontin which helps with many things for me to move. I have a tremor and it slightly helps with that.
I am on IV steroids for 3 days when I need it. It has caused my insulin dose to go up.
Hang in there! As long as you like your doctor that helps.

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