Quantcast

Ataxia Support

Any SCA 5 ataxians out there?

Hi, I am new to the site and my father and I have SCA 5, there is little to no research out there and what is there does not fit us at all. Ours is NOT slow and he is wheelchair bound. DNA genetic testing confirmed our diagnosis, so we know for a fact that is what we have. MRI's, CAT scans, spinal taps, all of that was clear.

I am interested in talking with others who have SCA 5 to see what symptoms you have and when they started.

I am 47, Dad is 70 Thank you in advance.

There are so many SCA sub-catigories and yes, so little information. I would like to know what SCA level my husband is (has had Ataxia for 8 years now). When I asked his neurologist for a new MRI (he only had one at diagnosis) and also asked to know what SCA he is, his response was "what's the difference." In other words, what good would it do? I don't like this guy but he's my husband's choice. I wish you well and I hope you have a more compassionate & understanding doctor than my husband's. Janet

Janet, that’s horrible. I don’t know why so many neurologists are so careless and even uncaring in their bedside manners. I explained our family’s problem with diagnosing my son re: SCA6. My doc agreed to write the order for genetic testing if I found out the specifics (paperwork and specific kind of blood vial needed to transport the blood). So I did that and gave him the paperwork for him to write the order. We then went to a local hospital who gathered my son’s blood in a Voilet colored vial. The lab gave us the blood because they didn’t know what to do with it. So we took the blood to FedEx and had them send it to the Genetic Testing Center at University of Washington (just outside of Seattle). The test was performed and the results sent to my doctor, who then gave them to me. It was a more complicated process than I expected because none of the professionals I dealt with knew how to Oder the testing or what to do with the blood sample. (Oh. Be prepared to give your doc the Dx Code he’ll need for the order as well.). However, these diseases are rare and family doc’s may not be used to getting genetic testing done. And such testing isn’t even available in most states. So you need to do the leg work yourself and I can help you with that if you like (having gone thru it myself).

Dear Allie, Welcome to this site! Although I do not have SCA 5, I do have ataxia (unknown cause). Hopefully, you'll hear from others with SCA 5. My best to you and your dad..., ;o)

Thank you Rose and I hope to hear from fellow SCA 5 Ataxians as well.

I agree with Nancy, you should have him tested to know what Ataxia he has so you both know what to expect. You deserve to know.

by the way my MRI's, CAT scan and lumbar puncture were all NORMAL, so you cant go by them alone