Just joined - brief bio

New member. My 64 yr old wife has SCA 7. Dr’s initially diagnosed it as MS in 2009. Shots for 5 yrs. Ouch! Finally a specialist in Rochester, NY diagnosed SCA in 2014. We live in Buffalo. Recently, Univ of Rochester started a Rilutek study and tested my wife - sca 7. She is very functional but has vision and gait difficulties. Her father presented with similar gait difficulties but was never confirmed as SCA. Dr, thought he was having T.I.A.'s.
I am 54 years old. I was diagnosed with Parkinson’s in 2005. On Aug 6 last year I retired from my job.

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I’m taking Riluzole too. i have been diagnosed with Cerebellar Ataxia. What’s TIAs? Welcome!

T.i.a’ are mini strokes that are sometimes not even felt by the pt. Their
MRI presentation can be difficult to read. Also, many neurologists know
nothing about sca

Hi, welcome😊
You’ll probably not be surprised to hear that many of us here have been misdiagnosed😏 And, it’s not uncommon to ‘acquire’ Cerebellar Ataxia after a stroke, that may have caused misdiagnosis🤔

For anyone who hasn’t heard of Riluzole, it’s the only drug that has even the slightest hint of slowing down the dreadful Motor Neurone Disease. But, it’s known to be fraught with side effects and demands a strict routine of blood tests. There has been research done to find beneficial effects on Ataxias. Currently, Friedreichs Ataxia has shown the best results.x


Welcome Chico713. All the best.

Thanks for the note. I was a drug rep for 25 yrs. The looks I got from doctors when I mentioned SCA said a lot. I urge everyone to fully educate yourself and find a physician you trust and have confidence in. Someone you can communicate with in between the 6 month visits. Ask your neurologist if he is “SCA Aware” and on top of the latest info. You ave to push them. They are wired to “do no harm” not dig for new ways to tackle a challenge like SCA. It takes a proactive approach in a profession where reactive is the norm.

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Hi Chico716
I’m sorry to hear your bio
You are the first person I have come across from Buffalo who even “heard” of Ataxia.
I am a 49 year old woman living in City of Tonawanda. I developed Cerebellar Ataxia in 2011. I unfortunately can not walk without a walker and have the slurred speech. Also the tremors. It has certainly changed my life.
I have to say I am sorry to hear about your wife, but somehow I feel no longer 'alone" having heard of someone in Buffalo.
Best regards
Lynne :blush:

Sorry, I just noticed I called you Chico716 instead of Chico713. Sorry

Ask your dr about rilusol “Rilutek”. There is hope

Beryl, search rilusol and the lancet and you’ll find the side effects overstated. Remember this is the first med ever for sca.

Welcome to this very friendly and informative platform with knowledge from the experts, the patients living with Ataxia.

Alan Thomas (Wales)

National Ataxia Foundation regular Attendee

:slightly_smiling_face: The Lancet July 2016, the data plus the efficacy shown in the Riluzole trials, suggests that this medication is more effective for symptomatic treatment, with which improvements can be expected immediately. Less so for disease modifying treatment. Short term trials are proposed, for specific ataxia disorders.

AtaxiaUK say, Riluzole is approved for ALS and MND. There may be some potential in Riluzole for Ataxia but the research to date has been inconclusive. However, doctors can actually prescribe it to help alleviate certain ataxia symptoms.


I may have missed this somewhere but what does SCA stand

Spino-Cerebellar Ataxia. From what I understand it’s an inherited form of Ataxia and there are many different variations.