American Ataxia Networking

Helping Unite Americans with Ataxia

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Latest Activity

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Jeannie left a comment for Lilly Young
Happy Birthday Lilly!
7 hours ago
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Jeannie commented on Jeannie's group 'Prayer'
Counting the Blessings Hidden in Illness With the holidays nearing once again we are urged by everyone from Hallmark commercials to our local newspaper editor to take a moment to count our blessings. If you live with a chronic illness you may find…
7 hours ago
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Michael Ward commented on MichelleisachildofGod DeCiantis's blog post 'Not unusual-taking yrs to get dx/SCA'
Thanks for the information!
11 hours ago
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MichelleisachildofGod DeCiantis shared their blog post on Twitter

Not unusual-taking yrs to get dx/SCA

12 hours ago
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Not unusual-taking yrs to get dx/SCA

A min of 31gene mutations found in SCA, yet only 12 identifiable by genetic blood test. If you don't have confirmed family dx in SCA # and your genetic test are not one of the 12, you will be SCA unknown or unidentified.  But progress is being made, so don't give up.  I had SCA (by means of atrophied cerebellum) but no # becauase I wasn't one of the 12.  I did however have an abnormal gene mutation SETX, which no one was familiar with, nor did anything about.  In Oct.2011, my current neuro said…See More
Blog post by MichelleisachildofGod DeCiantis 12 hours ago
1 Comment
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sentient SF replied to sentient SF's discussion 'Neurologist update'
I think the medicine needs to be taken under supervision and honestly I think the medicine really helps only a few people. All the present medicines only work for some symptoms but there is nothing for the condition really, even for FA. There is…
20 hours ago
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ERIKA PAMELA MARTINEZ BARBA replied to sentient SF's discussion 'Neurologist update'
I know that I shouldn´t take a bunch of pills, but the problem is that i don´t kNOW what i have, in my country Bolivia the doctors couldn´t give any answer, they send me to the psicologist. So last mont I went to CHILE to get a…
21 hours ago
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ERIKA PAMELA MARTINEZ BARBA and R Viswanathan are now friends 22 hours ago
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Michael"Bones"Jones left a comment for ERIKA PAMELA MARTINEZ BARBA
Hi Erika thinks or being fiends. Michael
22 hours ago
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Michael"Bones"Jones and ERIKA PAMELA MARTINEZ BARBA are now friends 22 hours ago
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R Viswanathan commented on MichelleisachildofGod DeCiantis's video
Hi Michelle I am in Toronto, Canada. I have SCA1. I am 56 yrs old. Wish you all the best in your efforts. Hi to Amanda too.   RV
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ataxia awareness video 3 michelle part 1

yesterday
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sentient SF replied to sentient SF's discussion 'Neurologist update'
Erika, I paid $20 and my insurance pays the rest (which I think must be quite high). You need a doctor to supervise it. Don't just take a bunch of pills, they can cause a serious problem. I don't know of any agency although if you can…
yesterday
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ERIKA PAMELA MARTINEZ BARBA replied to sentient SF's discussion 'Neurologist update'
i´d like to know where can i buy amantadine. Today I went to the pharmacy a none know what is this, i´ll try to buy it in USA, Do u know how much is the cost, i´ll buy idebenona and amantadine, some vitamins (E,D,C,B1,B6,B12). Do…
yesterday
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Rolynn Rose replied to sentient SF's discussion 'Neurologist update'
Jennie, Dr. Gomez started me at 100mg 2'x per day from the beginning.  I think I have read that some people start gradually and increase, but I started at 200mg day and have not increased as of yet.  I am pretty satisfied with the…
yesterday
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Jeannie replied to sentient SF's discussion 'Neurologist update'
Rolynn, so you take 100 mg 2x's per day? Did you start out with 100, 1x and work up or less mg than that do you remember? Without your legs being as stiff can you support yourself without any walking aids? This sounds actually great if it helps…
yesterday
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Jeannie commented on Jeannie's group 'Prayer'
When at night you cannot sleep, talk to the Shepherd and stop counting sheep.  ~Author Unknown
yesterday

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    Blog Posts

    MichelleisachildofGod DeCiantis

    Not unusual-taking yrs to get dx/SCA

    Posted by MichelleisachildofGod DeCiantis on January 31, 2012 at 4:34am 1 Comment

    A min of 31gene mutations found in SCA, yet only 12 identifiable by genetic blood test. If you don't have confirmed family dx in SCA # and your genetic test are not one of the 12, you will be SCA unknown or unidentified.  But progress is being made, so don't give up.  I had SCA (by means of atrophied cerebellum) but no # becauase I wasn't one of the 12.  I did however have an abnormal gene mutation SETX, which no one was familiar with, nor did anything about.  In Oct.2011, my current neuro…

    Continue
    Jeannie

    Chat room.........

    Posted by Jeannie on January 29, 2012 at 6:03pm 0 Comments

    Please join us in the Chat room on AAN right now! We woud love to chat with you! :-)

    Jeannie

    Groups on AAN.

    Posted by Jeannie on January 28, 2012 at 11:53am 0 Comments

    I start up a group for some of the people on AAN called "Prayer" for those that feel comfortable talking about Prayer/God. Please feel free to stop by anytime to check out what we are talking about there under the tab at the top, click on more and you'll get the drop down of Groups.  Just click on the words to see what's available for you to join here.

     If prayer isn't your cup of tea you are welcome to start your own belief group here on AAN also. We are sinsitive to other's thoughts…

    Continue
    ERIKA PAMELA MARTINEZ BARBA

    Hi to all!

    Posted by ERIKA PAMELA MARTINEZ BARBA on January 28, 2012 at 4:10am 4 Comments

    I´m Erika, from Bolivia, so I want to know if anyone speak spanish?

    I have problems with my cordinations, maybe i have FA, i´m waiting my  blood test.

    Since 2007 i begin with this problem, at the first time i couldn´t walk someone should help me, then i get better, i can walk alone . I have a clumsy way, there is no pain.

    The doctors can´t give a diagnoste, so last month i travel to other country to Santiago de Chile, and the doctor said that I could have FA, so he order…

    Continue

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    Forum

    The Miff

    My new house in Teresina

    Started by The Miff in Sample Title. Last reply by Michael Ward yesterday. 3 Replies

    Well, I've finally settled into my new home in Teresina, Brazil. I did this little video for my family, to show our house. It's fully wheelchair accessible!…Continue

    Jeannie

    Resources and Gadgets to Improve Your Health When You are Chronically Ill

    Started by Jeannie in Sample Title on Saturday. 0 Replies

    By by Lisa CopenIt is the time of year when many people are setting fresh…Continue

    Jeannie

    Research

    Started by Jeannie in Sample Title. Last reply by sentient SF on Thursday. 1 Reply

    Scientists Getting The Gut Connection!Did someone at Stanford University see “The Road to Perfect Health” PBS special? Now…Continue

    Margaret Wozniak

    Speech devices

    Started by Margaret Wozniak in Sample Title. Last reply by Margaret Wozniak on Saturday. 1 Reply

    I started with slurred speech. Now I can be understood. Sucks to try and talk to people or make a joke. Try to explain a joke, you quit joking. I cannot call to discuss anything or make appt. because they can't understand me.People think you are…Continue

    missy stowe

    saw ths on tv jst thought it ws intresting

    Started by missy stowe in Sample Title Jan 20. 0 Replies

    http://www.bodyintelligence.com/video    has anyone heard of ths?Continue

    Jeannie

    Does anyone else have pain with your Ataxia?

    Started by Jeannie in Sample Title. Last reply by Jeannie Jan 22. 12 Replies

    I sometimes use Arnica gel to take the edge off, but i I've been wondering how others cope and what you do natural or not!

    Tags: with, your, Ataxia, pain, have

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