Living With Ataxia - Online Support Group

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nati cepeda Comment by nati cepeda on March 16, 2010 at 12:48pm
hi,
how r u doing? how is ur treatment coming along? i havent signed on for a while. i've been too depressed. i am trying to exercise now, i hope it helps.
Lorraine Lerner Comment by Lorraine Lerner on February 8, 2010 at 3:16pm
hi Nati,

You can get in touch with the national ataxia foundation ataxia.org. there is a forum on that site where you can talk with other ataxians. in the article I posted on chantix and ataxia the doctor doing this work is Dr. Z at the univ of south florida which I think is in Tampa??? there is another ataxia site that you can join and ask questions and advice if you want. http://americanataxianetworking.ning.com/
nati cepeda Comment by nati cepeda on February 7, 2010 at 6:39pm
hi,
i live in tampa fl. like which ataxia foundation? i would b so happy if they can.
Lorraine Lerner Comment by Lorraine Lerner on February 7, 2010 at 11:33am
hi Nati,

doctors seem interested in studying ataxia that runs in families. maybe they'd be interested in you along with your sister. I would get in touch with an ataxia foundation and explain your situation. maybe there's something they can do for you. where do you live?

Lorraine
nati cepeda Comment by nati cepeda on February 6, 2010 at 6:12pm
hi, yes i have friedeirich ataxia, but i dont have a doctor, money, or insurance to join the study. my sister said they r requesting that she geets a whole bunch of test done. thanks, pls keep me updated.
Lorraine Lerner Comment by Lorraine Lerner on February 6, 2010 at 11:13am
hi Nati,

I am lowering my dose on chantix because I'm shaking real bad, more than usual. but it has helped the dizzies which are at times intolerable. other than that I haven't noticed anything. do you have ataxia? maybe you can get on the study with your sister.

Lorraine
nati cepeda Comment by nati cepeda on February 5, 2010 at 8:05pm
hi,
i am really interested in ur progress. how r u doing know? do u see any other changes other than ur dizziness? i told my sister who also has FA and she joined a study on it for june. i cant really do anything because i do not have a Dr. i dont even have insurance and i heard all the testing is expensive. i have no way of trying it now, but can i write to u every now and then to see whats new and how u feel.
thanks a lot.
nati cepeda Comment by nati cepeda on January 29, 2010 at 6:06pm
thank u, this would help me a lot. i am going to see what i can do to get on it.
Lorraine Lerner Comment by Lorraine Lerner on January 29, 2010 at 12:30pm
I've been taking it over a month. It has helped my dizzy spells which make it difficult to do anything. I got a prescription from my neurologist. the only side effect for me is that it's making me more shaky and bouncy, but I'll take that over dizzies. I started with one .5 mg and each week added one for 4 weeks, 2 in morn, 2 at night is the recommended dose.

Lorraine
nati cepeda Comment by nati cepeda on January 28, 2010 at 10:39pm
wow, i would love to try it.

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