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Welcome to the Beerys Dystonia Support Community This community is for people and families that want to share their stories, help each other, ask questions and provide answers.

Wednesday, September 08, 2010

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Community Updates

September 04
Retta Beery replied to RE: To those struggling with dystonia
a week agoComment

Retta Beery stuter Hello! So glad you found our site and thank you for your posting. I read your other posting about the uti's and wanted to share Alexis's history. She had uti's, starting when she was about a year old. Her temps would spike up to over 107 and she would experience seizures. After her 3rd uti, we had a VCUG test and found that her urine was refluxing up into her kidneys. This was 4 years before starting on the carb/levadopa. After many years on antibiotics and testing every year, she finally had surgery to fix her urinary reflux. Has your doctor looked into the possibility of urinary reflux for you?

a week ago

September 03
Retta Beery created an article titled Heading to Houston for our DNA sequencing project

a week agoComment
Retta Beery created an article titled Neurologist appointment today - could breathing problem be linked to Dystonia

a week agoComment
Retta Beery created an article titled Cystic Fibrosis test

a week agoComment
Retta Beery created an article titled Inhalant is helping Alexis breath, but is it causing long term problems?

a week agoComment
Retta Beery created an article titled Birthday Party is a success!

a week agoComment
Retta Beery created an article titled Could Alexis's breathing be a part of her Dystonia?

a week agoComment
Retta Beery created an article titled Gathering records

a week agoComment
Retta Beery created an article titled Can anyone help our little girl?

a week agoComment
August 30

stuter Retta Beery retta i saw the story the twins and i cried as i was amazed how similar our stories are. I have adult onset DRD and normally healthy and within 2 years i was in a wheelchair. as of january i have been on medication and fully fuuncting. we are waiting on dna results. i have 9 year old boy girl twins who may aslo have it. right now they have adhd, terets, learning difficulties, sensory intergration issues, and very ridged muscle tone. the twins were born early and were always spewing and were never content as babies and still have some issues. i have read that it can be herditary but my current genetics doctor said he would not test them until they showed more symptoms. your story just puts a smile on my face knowing that i am not crazy and that true persistance really pays off thank u.

about 2 weeks ago

August 29
stuter Dopa-responsive dystonia I have DRD and treatment is going well except i keep getting uti. medical research has come a long way in the last few years.
about 2 weeks ago
stuter has joinedDopa-responsive dystonia
about 2 weeks ago
August 27
stuter replied to RE: To those struggling with dystonia
about 2 weeks agoComment
stuter glad to have found this site. i am the quincy woman in aticles and am looking for othes like me

about 2 weeks ago
stuter has joinedGeneral Information
about 2 weeks ago
stuter is friends with Retta Beery
about 2 weeks ago
Retta Beery is friends with stuter
about 2 weeks ago
August 14
Retta Beery created an article titled Paris

a month agoComment
Retta Beery created an article titled Trip to Europe

a month agoComment

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