Originally Posted by brotherman

Anybody would be confused, angry and hopeless in the face of a diagnosis of SCA. You will, and I suggest you do, look everywhere on the web for likely symptoms and what you can expect. I would suggest that if you had SCA 3 or Mikado-Joseph disease, you would have symoptoms long before now and would not bother to ask. I also suggest that having genetic testing is a waste of money and will tell you nothing. Testing costs 12K$ and will tell you only what variant of the 30 or so variants there are when all the symptoms are virtually the same regardless of the variant you have.

Further, don't waste time or money going to China for Stem Cell tx. This will at best back off your sx. a few years and is mostly due to the physicsl therapy they do in conjunction with this.

Suggest you develop habits that are helpful. Turn on the bathroom light before you walk in and avoid the dark that will trip you up. I have fallen down between the john and the tub and this is no fun. Look where you are going at all times. You can't dance, swim, run or bike. Learn to live with your limitations and explore what you can still do. Don't think you can do what you used to do and overdo it. Fatigue is one of many universal symptoms. Just think, you don't have to mow the lawn anymore. Accept the aging process and learn to live with this - you'll be happier. Love the kids. They'll do anything to help Mom.

Remember, you did nothing to cause this problem. NOTHING!! This is hereditary and you were doomed to this before you were born. It may suck but you can live with it. I was the tailback in high school. I used too bike 100m every weekend. I used to swim like a fish and run like the wind. Those days are gone. Sorry for the reality but you need to know.

Brotherman

Originally Posted by TeenaM

On another note, does anyone know approximately how many people get diagnosed with SCA?

Originally Posted by TeenaM

Hello. I am new here. I was just diagnosed this week and reading what is posted has been very helpful. Why does it seem to be that doctors blame the patient when they can't figure out what is wrong? I was sent to a very "reputable" practice and the doctor thought I had essential tremor, but when the medication did not work she wanted me to see a psychiatrist. I knew this was not something I was doing, so I found a new doctor. He could not figure me out, but he sent me to someone else instead of thinking it was me. I have read that others were also sent to psychiatrists, that is just not right. It wastes time, money, and makes the patient feel like an inch tall. Why can't some of them just say "I don't know"?
On another note, does anyone know approximately how many people get diagnosed with SCA? I forgot to ask my neurologist how common it was. I don't see him again for several months and could forget to ask again.
Thanks for letting me vent a bit.

Originally Posted by pabb

research celiac/gluten ataxia and ataxia d/t CoQ10 def.

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