Author Topic: Help Dystonia Diagnosis  (Read 3068 times)

Offline Bev

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Help Dystonia Diagnosis
« on: April 11, 2013, 06:55:51 AM »
Has anyone here have a child with Dystonia? Or does anyone have a lot of knowledge in this area.  Our Neurologist is trying to say she has Segawa's disease. Which is a type of Dystonia. I am not one hundred percent convinced because no MRI or sleep study has been completed. This type of Dystonia has an absence of dopamine in the brain so they prescribe L-dopa for the symptoms.  She is on dopamine right now but it only works half the time.  Her symptoms are closely related to Cerebral Palsy. it gets really bad.  I have often wondered lately if she could have parasites or even Celiac Disease (she is getting tested for Celiac Disease this next week) After reading much on Celiac Disease I found out WOW it really can affect you neurologically even causing some to not be able to walk or speak until the gluten is cleansed out of the body.  My question is if anyone has had any similar problems and if they had a positive outcome?  How can you even tell what type of parasite you have if its that.  My daughter is only three any help would be much appreciated.

Offline his.silly.wife

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Re: Help Dystonia Diagnosis
« Reply #1 on: April 11, 2013, 09:07:30 AM »
A friend of mine was diagnosed with Dystonia as a child.  He had the whole range of twitches and muscle issues.  His teachers didn't think he was very bright, but he was a Bible scholar, computer geek, and movie buff.  He definitely went further than the school system thought possible.

He had fewer twitches when he ate whole foods.  His wife cooked Nourishing Traditions type of foods.  Coca-cola and coffee made his symptoms worse.  So I strongly believe that food choices can make a difference in the dystonia symptoms.  Sorry, I don't have any answers, just observations.  From what I saw him go through, I would definitely investigate a link to fungus and parasites.
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Offline Bev

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Re: Help Dystonia Diagnosis
« Reply #2 on: April 11, 2013, 03:21:44 PM »
Thank you for the information. I know with Dystonia high fructose corn syrup makes it much worse.  The dopamine isn't working anymore. Hopeful to find more answers soon.

Offline Precious

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Re: Help Dystonia Diagnosis
« Reply #3 on: April 11, 2013, 04:15:19 PM »
I don't have any personal experience with dystonia, but neurological problems always make me think of B12 deficiency, Vitamin D deficiency, or heavy metal poisoning.  A ketogenic diet might be helpful for her.

Offline Bev

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Re: Help Dystonia Diagnosis
« Reply #4 on: April 11, 2013, 06:48:24 PM »
thank you this looks very helpful and interesting. I saved it in my favorites box so I can refer back to it.