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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 miocean

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Posted 08 March 2009 - 05:23 AM

Hi everyone! I have a question about shaking and tremors. Every since I was diagnosed with sclero five years ago I have had trouble with shaking hands and tremors. Even my legs shake when I am doing exercises. At first I thought it was due to weakness but it has been going on too long.

I am going to a neurologist on Tuesday. I haven't seen her in five years but she was instrumental in diagnosing sclero. She is a great doctor, one who is very accessible. I am wondering whether the shaking is sclero related or something else. Anyone else with this problem? If you know of any related links let me know.

Thank you!
miocean
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#2 Margaret

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Posted 08 March 2009 - 06:22 AM

Hi miocean ,

Gareth has had tremors and shakes for 3 months now. We assumed it was from his seizure meds and are currently weening him off one and adding another. If the shakes continue, you can add him to your list. His started with minor hand tremors and now it's his arms, tongue, and legs that shake and quiver. I never thought Sclero could be the cause.

Take care, Everyone.
Margaret

#3 Wohali

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Posted 09 March 2009 - 03:27 PM

Hi Miocean,

I have CREST and have shaking hands which has suddenly become worse the last few months. I have discussed this some in other posts but I also have other weird neuro symptoms that have started including my teeth chattering together to the point it wakes me up, muscles quivers or spasms above my knees that happens at night, random quivers in my calf muscles. I've just started making this bizarre sound that seems to come from vocal cord spasms. I assume it is somehow related to the traumatic brain injury (TBI) I've also been diagnosed with. The symptoms I listed above all show up in Wikipedia as symptoms of dystonia including something else weird I do which is I walk better if my hands are in my pockets as I have a balance problem. That is also a symptom of dystonia. And people with brain injuries are known to get dystonia However the hand shaking is also symptoms of essential tremor and Parkinson.

The neurologist has a 5 month waiting list so I am waiting to see someone to figure out what is going on. I did notice that after taking Zaniflex the hand tremor lessened. Zaniflex is a powerful muscle relaxer used for MS patients. My doctor just decided to try it because he's exhausted all other ideas to control pain and muscle spasms.

Oh one other thing I am seeing a neurological physical therapist and he did point out I have tremor when doing something and also when at rest which is kinda odd. I think they call it attentive and inattentive tremors or something like that. Don't know if this is of any help since I have no clue what is happening with me.

#4 Margaret

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Posted 10 March 2009 - 05:20 AM

<<The symptoms I listed above all show up in Wikipedia as symptoms of dystonia including something else weird I do which is I walk better if my hands are in my pockets as I have a balance problem. That is also a symptom of dystonia.>>

OMGosh.....Wohali.....this is Gareth!!! He always walks around with his hands in his pockets. How would that help with balance?

Take care, Everyone.
Margaret

#5 Wohali

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Posted 10 March 2009 - 06:28 AM

Margaret,

Some people may just walk around with their hands in their pockets because they like to, especially guys. Its just when they have other symptoms of dystonia and also walk around with their hands in pockets is when you might become concerned. Apparently it helps with quieting down tremors and helping to balance when walking is why someone would do it. Also people with certain kinds of dystonia sleep with their arms under the pillow to hold their arms still. Something else I do that is a listed symptom! And one other weird thing I do is when I sit in a chair I tend to tuck each hand under my leg apparently to hold them still. I've done this the past 20 years.

#6 Jeannie McClelland

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Posted 10 March 2009 - 08:07 AM

Have you all looked at this article on: Muscle Cramps Associated with Localized Scleroderma Skin Lesions: Focal Dystonia, Neuromyotonia, or Nerve Entrapment? It was posted on the Localized Scleroderma: Extracutaneous Manifestations (Symptoms beyond skin involvement) page.

I've found a lot of the behaviors I'd developed over the years were actually unconscious adaptative mechanisms to cope with some manifestation of scleroderma. One that got me in mild trouble at work was my habit of always crossing my arms and tucking my hands in - someone who was really into body language chided me for sending 'unreceptive' signals to people who were talking to me. Of course, what I really was doing was trying to keep my hands warm (Raynaud's). ;)

Hugs to everyone,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
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International Scleroderma Network