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There will be a fundraiser for Ataxia (my husbands two cousins have it) - and he wants me to tell people there about CCSVI - questioning if they may have it.

A newspaper article about the fundraiser says, "It's often misdiagnosed as multiple sclerosis, a disease that attacks the central nervous system which has similar symptoms...

...All proceeds will go to support research efforts at the University of Rochester Movement and Inherited Neurological Disorder Unit."

Does anyone know if the symptoms of "ataxia" are improved with the Liberation Treatment?

Do I dare suggest the Libreration Treatment? If they ask their doctor if there is a venous issue, then pehaps Dr. Zamboni can add one more condition to CCSVI.

People with Ataxia are often misdiagnosed with multiple sclerosis, yet it is a different disease. Even though people with MS also have ataxia concerns. I think it would be worth a doppler, anyway!

All I can say is the vascular surgeons had better get with the program really fast. When people have stenosis yet do not have multiple sclerosis, only TIME WILL TELL takes on a whole new meaning.

see http://www.thisisms.com/ftopicp-128021.html#128021

is this a diagnosis of friedreich's ataxia? there seems to be some research linking FA and subaortic stenosis.

The most common type of ataxia is Friedreich's Ataxia, which is a hereditary neurological disease with MS like symptoms. The reason I am interested in it is that a neurogist once suggested I should be tested for it because I had so many of the symptoms, but the test was negative.

Unlike MS, the cause of Friedreich's has been known for about ten years now - faulty iron metabolism - so I doubt there is any connection with the vascular system. There is no official conventional medical treatment, but iron chelation with deferiprone has shown to have some success. Idebenone and other free radical scavengers are thought to help.


gains

Thanks for the replies - I've forwarded the information on to the family.

Lady Gazelle

Hi,

My name is Michel Beaudet, I'm 48, have FA and live in Quebec, Canada.
I'm sending this message to invite people to join a list for those with ataxia. The list is called Internaf and there's also a website full of info at http://internaf.org

International Network of Ataxia Friends is a mailing list for ataxia patients and family/friends which serves as a support group and information exchange vehicle. There are currently over 700 subscribers from more than 40 countries worldwide.
Subscriptions to INTERNAF is free.
For info on how to subscribe, go see, http://internaf.org/network/services.html or
for email only access click here and send: internaf-subscribe@yahoogroups.com or
for full yahoogroups features access go to http://groups.yahoo.com/group/internaf/join

Bye
ps: Don't hesitate to email me if you have questions about internaf
--
Michel Beaudet
michel.beaudet@videotron.ca
Internaf - INTERnational Network of Ataxia Friends
http://pages.infinit.net/macmike
http://groups.yahoo.com/group/internaf
http://www.internaf.org