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Alexis100
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Ellen S replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
Beka, I think you mean LDN - Low Dose Naltrexone. I posted a video on it, as well as a blog post on its use in fibromyalgia, and there is more research happening that is coming to the forefront.
July 20
beka replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
Oh, Sorri- getting names confused.. cant sleep during the day after a nite shift... beka
July 20
marie replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
beka-that was mo not me marie
July 18
beka replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
marie- what is Ind ??? beka
July 16
beka replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
Alexis - are you sure that you do not have sapsticity in your arms and legs ? Are you taking any of the injectable drugs used for MS ? Welcome. beka
July 16
noelv and Alexis100 are now friends
July 10
marie replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
hi alexis-i had a ms dx and i think copaxone may have triggered my movements.totally ot but hi mo.are you still in a cast.love,marie
June 30
Mo replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
alexis, get on ldn immediately for ms. there is an online group i can refer u to with a wealth of info. who knows it may help with dystonia? it is one of the few meds that actual does the body good. it was originally used at a higher dose, 50 mgs...
June 28
Alexis100 replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
Dear Mo, Thanks for taking the time to write. I have heard of these exercises too. I am looking into them. Now, if only I could find the strength and energy to try to do them, These "episodes" take so much out of me, last one I had I nearly passe...
June 28
Alexis100 replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
Dear Ellen, Thanks so much for your supportive message. I have been tested for Lupus and ALD and a bunch of other autoimmune diseases and they have all been negitive. I have heard that the fever, can be caused by the muscles working overtime and/o...
June 28
Alexis100 and Ellen S are now friends
June 28
Mo replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
alexis, i wish i had the magic answer for you but it sounds like the neuro industry is placing you on the craptastic med ride they put me on. the meds made me worse and nothing helps my tremors for head. right now i dont take meds. i do know ther...
June 28
Ellen S left a comment for Alexis100
June 28
Ellen S replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
Alexis, I hope you are able to find comfort and support here by others who are living with Dystonia. My dystonia is different, and I don't have MS. I do have lupus tho, and wonder if you have been checked for additional autoimmune diagnosis'? Fev...
June 28
Alexis100 replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
Jacqueline, Yes, she is a neurologist at UC Davis Med Center in CA. Actually, the Dilantin was the Neuroligist's solution to the Dystonia that she diagnosed. The "attacks" started directly after taking Lyrica a phenytion family drug. This was giv...
June 28
Alexis100 replied to Alexis100's discussion 'New to Dystonia & Very Scared - Anything you can pass my way would be SO very helpful.' in the group Dystonia Neuro Movement Disorder
Thanks you so much for the advice. Vicodin itself is not essential but some sort of pain med is. I feel like I have been run over by a tractor. I tend to be a real lightweight when it comes to medications of all kinds and tend to have bad reations...
June 27

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In the online health communities I participate in, I'm:
not really sure where I fit yet
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a community I contribute to
More about me (my health interests and reasons for joining WEGO Health)
I have dystonia and I am looking for answers.

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At 10:43am on June 28, 2009, Ellen S said…
Welcome to WEGO Health and the Care4Dystonia forum - we're so glad you're here! Have you had the chance to take the Health Activist Quiz? You can find it HERE - it's fun and interesting and very short.

If you have any questions about navigating the site, just swing me a message, okay? I'm here to help. :) Have you met Beka yet? She's fabulous and a wonderful resource.
 
 
 

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