Originally Posted by notdrunk

Hello Everyone,

I am new here. I am still trying to digest my diagnosis. I have problems with dizziness, lack of balance and sometimes stumbles and falls. My gate is not what it should be, I struggle with the sobriety test and I can't walk with my eyes shut more then a step or two. It has been the last five years of symptoms worsening and seeing neurologists, doing tests and getting second and third oppinions. Even just two years ago I was wearing high heals, dancing, walking normally even in the dark. We know it is changing. We know that my cerebellum is too small, they can't tell at this point how much it has shrunk only that it is small and that my symptoms and performance during their tests is worsening. It has been concluded that as far as genetic testing can tell, it is not. But there are many genes they have been not been able to test as of yet or possibly recesive genes as the cause. Any how the Neuro team has concluded Atrophy of the Cerebellum and just last week they are now calling it SpinoCerebellar Ataxia. It just isn't one of the known forms of SCA.

Sometimes I wish I could know that it is SCA 3 ( which is so super bad) or SCA 8 (which is not so bad) just so I could know what to expect and what to prepair myself and my family for. Other times it seems that maybe the hope can remain becaue of the mystery. Any one out there who has been diagnosed with an unkown SCA. Any advice/ eperience out there about handeling this unkown/ anger/ grief/ confussion.

I am a Mommy of a two year old little lady and am half way through my second pregnancy. It matters very much to me to be as possitive and happy as possible. I don't want my kids to hurt from this. I need to figure out how to go forward and to remain myself.

Any help would be so much appriciated