fredriechs ataxia disease/HELP Please - Muscular Dystrophy Message Board

mgd2962 · 05-16-2002, 12:07 AM

Is there anyone who knows about or has this disease? What are the common begging symptoms? How it is diagnosed? Any information will be helpful. I just had the blood test to check for the gene. I have been in limbo for the past 12 months, I have had multiple symptoms and have a temporary diagnosis of probable ms. Yet the specialist I am seeing at UCLA now believe it is not ms. They are checking different metabolic disorders along with the freidrich ataxia gene test. Thank You for your comments.Michelle

05-16-2002, 03:09 PM

Hi,

I found a link for someone a few hours in the 'Rare Disorders' forum here about this - it's also known as 'Spinocerebellar degeneration'. I have no personal experience of this disease but I try and help people by doing Internet research....
[url="http://www.nlm.nih.gov/medlineplus/ency/article/001411.htm"]http://www.nlm.nih.gov/medlineplus/ency/article/001411.htm[/url]

Wishing you all the very best.

Zafu

Rainfeather · 05-19-2002, 07:33 PM

Try this website it is great!!!
[url="http://www.mdausa.org"]http://www.mdausa.org[/url]

It is the website for Muscular Dystrophy. It can answer many of your questions and if you need further advice from others going through this they offer a FA Chat on tuesday evenings from 6pm to 8pm (central time I believe). I help a lady during the day with FA and she is one of the cohosts of this chat. They are always willing to talk and help.

Good Luck and I hope this will help.

[This message has been edited by Rainfeather (edited 05-20-2002).]

NHone · 05-25-2007, 11:29 PM

My mother has cerebellar ataxia. However her doctors were of no help. She even went to Washington University in St. louis, and Mayo in MN. Turns out it was a mitochondrial myopathy caused by cholesterol lowering by medications. Are you taking any medications. Ataxia can be caused by many medications. Ataxias are hard to put into any category because many of the symptoms overlap. Only the ones that show up in a genetic panel are ture ataxias (however some haven't been discovered)....the other just show up as ataxia because of underlying problems. Ataxia means walking disorder, plain and simple.... Ataxia is a symptom and not a disease..... Except the genetic ataxias, such a spino-cerebellar ataxia 1, 2, etc. fredrich's ataxia, and some others.