Hello, I have been diagnosed with Ataxia in January. I see many people have a type of Ataxia. Is there testing for this? Thank you so much for your willingness to answer. Carolyn
I’m sure there’s those who can answer about testing (genetic), way better informed than me. I found out by reading a large textbook on neurological muscle performance…I’d been in to see a doctor in 2009…I was told no, you don’t have PD. But I was only offered Botox, which has caused at least 16 deaths. So, I sought out a functional neurologist. And failed the tests I’d passed in 2009! The textbook was excellent. I could rule out MS, PD, stroke, and ALS. The other neurological disorder addressed in the text was cerebellar ataxia. I matched all the descriptions. JD
ataxia can be idiopathic or hereditary. It’s easier to figure out which type you have if it’s hereditary. The type should be based off of the symptoms you have.
Thank you JD. Very helpful!
Interesting. Is there a place that I can check for my symptoms and see what I would be inline with? Thanks Kay2
Hi😊 Neurologists often find it frustratingly difficult to differentiate between the numerous Ataxias, it’s definitely not something for the lay person to attempt😏
I live in the UK, so the decision over what to test for largely rests on the Neurologist, after a basic assessment. Here, we have automatic deductions from wages for healthcare, to cover such eventualities. In the US it’s necessary for an individual to arrange their own health insurance. This can mean there are restrictions when it comes to who will cover what. Some tests will be covered but inevitably some may be considered outside the payment plan.
Some people decide to pay separately for private testing, at facilities such as Athena Diagnostic Testing.
If you don’t know much about Cerebellar Ataxia, I recommend you log onto www.ataxia.org for a good grounding in the condition. It’s far from straightforward when it comes to deciding ‘which type fits you’. And, finding a Neurologist who actually specialises in ataxia is vital. There are links to such Neurologists, and Ataxia Centres.
I my case my neurologist convinced me to have a blood test he told me that he suspected sca by my MRI but the only way he could know for sure was by a blood test. I didn’t want to get one because there was no cure, so I thought why should I get the test, after about 3 years he convinced me by telling me my children and grandchildren might like to know. Before I got tested he asked me extensively about my heritage.neither of my parents showed symptoms but I do remember my Grandmother in a wheelchair. In those days no-one thought it was anything but old age. I have a brother who has the same symptoms as I have but he has never been to a doctor about it.
There isn’t a website or anything. I was diagnosed by my neurologist through genetic testing. The doctor knew what to look for because my father had it. If the type you have is hereditary then you can have the test done (it’s expensive). If it’s idiopathic it’s caused by an outside source (head injury, CVA, drug, surgery, etc.) and is harder for the doctor to diagnose.
I went thru lots of tests (blood work, visual test patterns, nerve tests, arms & legs (SSEP) motor skills test, CT scan of head with and without contrast, LP (lumbar puncture) & myelography - docs can’t tell what type of SCA I have so it must not be hereditary (my conclusion) no one else in my family has SCA
Hi Senior thank you for your reply. I went to the Neurologist yesterday and he is going to send me to a Mobility specialist. I am also being sent to a rheumatologist. I hope they will be able to give me some more insight.
Hi thank you for your response. The doctor said he believes mine to be hereditary however, I don’t know of any family members that have this. He said it would cost a lot of money to have the genetic testing done and most of the time the insurance company will not pay for it. He feels I have it already so why go thru all the expense.
Hiskid…I have an idea we are like-minded. May your Neurologist have wisdom and insight to help you! jd
Dear Hiskid777, I have Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7), diagnosed thirteen years ago, although I had extremely minor symptoms starting about eight years before diagnosis.Years ago I had genetic testing for the known resessive types of ataxia, which was negative. More recently, I had genetic testing for the known dominent ataxia’s, which was also negative. Then I had genetic exome testing which was inconclusive. Hence, my ataxia is still Sporadic (Idiopathic) as I still have no idea why I have it. No one in my family, as far back as we know, has/had ataxia, except me. My neurologist is convinced that someday the cause will reveal itself (hopefully in my lifetime, as I’m 63 years young…,ha!). All this genetic testing was done by a blood test. My best to you…, ;o)
Yes, there is testing of your DNA probably through your neurologist. My first testing about 15 years ago said I had OPCA. The last said I have sporadic Ataxia about 4 years ago. I think testing is wise because your doctor know about meds and especially exercise. Good luck to you