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Ataxia Support

Where are you?

:slightly_smiling_face: If you were interested, there is an Episodic Ataxia Support Group on Facebook :slightly_smiling_face: xB

Hi Beryl,

will have a look. Thanks.
ladybird

:thinking: Didn’t you mention you were diagnosed with SCA2… There are several ataxia support groups on Facebook…some ‘general’ but some for specific types. Re SCA2, a different group would probably be more ‘in tune’… I’m a member of a few groups, and useful advice gets passed around :slightly_smiling_face: xB

hi Beryl,

you remembered well. I am on health sthg just, remembered somehow got on the wrong section with quitting smoking, but was pointed to a right diagnosis…but none of it is specifically for sca2. I don’t mind, reading wider, then mine…

Thanks for thinking of me.
ladybird

I live in beautiful Sonoma County, California–the wine country! It is slightly north of San Francisco. SCA3.

Hi gabowitz, welcome :slightly_smiling_face: I live in the UK, but I’ve visited your part of the world, and it is beautiful…and definitely much warmer :wink: xB

Thanks for responding, Beryl. I have poked around several of the blogs and am glad l found this resource. It’s somehow comforting knowing you’re not alone.

Let me know if you ever get out this way again!

Pam

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Update - originally I was diagnosed TWICE with SCA from Athena but now had my sister tested at Cornell and we both have Niemann Pick (NPC1).

:thinking: That must have caused a lot of frustration, and annoyance, I’ve read that Athena offers options of testing, and something may have been missed.

excuse my ignorance, what’s Niemann Pick when at home?

thanks. my bro has ataxia sca2, but needs a genetic test to confirm…just changes on the lesions cerebellum, I am personally about 70% (he is 30%) milder form…Slovakia sounds as if NOT SO DIFFERENT as here, my case straightforward, walking difficulties, the scan and genetics confirmed he LESS AFFECTED, more open to interpretation, guess, whereas me nailed it…My Sir Watkins bld. is a par excellence place, as Sir Watkins him selffunctioned for years as a F1 doctor, did a lot of safety improvements, a helmet…for F1 drivers…in Britain…Nobody cld save A. Senna, the crush he had…

Hi ladybird, I also never heard of the Gene but I hear there is a “possible” treatment. Taking Miglusta, if you have a mild to moderate type C. Check this out for more information: https://www.mayoclinic.org/diseases-conditions/niemann-pick/symptoms-causes/syc-20355887. Cornell Medicine wants my sister and I to go on a Clinical Trial. Will see…

how wonderful, very brave of you both. Good luck with the result, is Niemann ataxia? or some other condition?

Orlando, FL, I know 100 other people living across India on whatsapp group.

:slightly_smiling_face: Hi sunny8088, I hope you are ok :slightly_smiling_face: xB

Kings Mountain, NC USA

I am in Liverpool, England.

Hi Muryb,welcome :slightly_smiling_face: I hope you’re doing ok. If there’s anything you’d like to ask/discuss please don’t hesitate to post :slightly_smiling_face: You can find links to previous discussions by typing a key word in the search box (click on the magnifying symbol).:slightly_smiling_face: xB

Hi Suzi

I am in west London.

Hi Suzi
I am from Hartford, Alabama USA

Just outside Edmonton, Alberta, Canada. I was diagnosed with SCA2 after my birth mother discovered she had it, in 2008. It is autosomal dominant. I started showing symptoms in my early 50’s.