Newly diagnosed

[Timotae]

Hello Everyone I have just been diagnosed with cerebral ataxia, no specific one just yet as still waiting for results of some genetic testing and been told may not get an answer.

I have roughly started with symptoms30yr ago, very subtle and was wondering what early symptoms others had and with hindsight know when it started.

The symptoms I now have is double vision, one eye effected, dizziness as if I am permantly walking on a moving boat, train or plane which is causing me balance issues, I can't ignore my symptoms now or just laugh them off as I once could before realising something major was occurring with in my body.

My kids are also going to have the option of being tested once we know more about what I have

[Hidden]

Hi Timotae

I was diagnosed with SCA 6 in September 2019. I too suffer from double vision in one eye but have had a prism installed into my right lens of my glasses which has worked for me.

I started getting symptoms in early 2017 with aching legs shortly followed by dizziness and balance problems and then double vision.

My brother got tested for the faulty gene but came back all clear my daughter will not go for the test as she prefers not to know.

I have reason to think I actually started with symptoms a lot earlier than 2017 but at the time never thought much about it.

You take care my friend.

Who Cares Wins?

[Hidden in reply to Hidden]

I was diagnosed in 2010. My first symptoms included balance, coordination and a dizziness feeling not related to my eyes. Later I found swallowing and choking to be problematic. I also have severe digestive problems and constipation. I have cognitive (thought processes) issues as well which has also been linked to my ataxia. I have very little speech problems though, which may seem unusual to some people who have ataxia. There is no cause yet found for my 'cerebellar ataxia'.

[rideabike in reply to Hidden]

Hello...I'm new to the group after testing with a neurologist showed ataxia. My symptoms are much the same as yours......also speech is not affected except for shortness of breath that causes me to run out of air before I finish my sentence. My jaw can feel extremely weak at times and vision is wonky. I think it's dysmetria that causes eyes to jump around instead of smoothly reading across the page. Zoom meetings are tiring and for that reason. I'm petty sure it's not genetic and is late onset, (61). Kind of glad to hear slurring of speech is not always found. Thanks for your post!

[Hidden in reply to rideabike]

Hi ridabike. Everybody diagnosed with ataxia have different symptoms. Speech is a very common ataxia symptom but not everyone necessarily has a slurring or other speech problem. Many people assume this but it is not the case. Many ataxia sites including Ataxia UK state that the main symptoms of ataxia are, balance, coordination and speech. My ataxia is also 'late onset'. I am 57. Take care.

[rideabike in reply to Hidden]

Thanks for the reply. For a long time I thought I had PD but the symptoms didn't sit well in my mind. For ataxia it all fits and is somewhat comforting to finally know.

[wobblybee]

Hi🙂 My symptoms started being a problem in the early 1990s. They’re largely Vestibular, although I do have most general ataxia symptoms. Eye problems have dominated my life from the onset of symptoms, and I’ve received helpful treatment from a NeuroOpthamologist. Despite extensive testing I don’t correspond to any current findings.

[Driven1]

Ensure your kids have top hospital and medical cover before getting tested. As most policies do not cover pre existing conditions. Have the test and confirmed, now you have a pre existing condition. In fact don't do the Ancestry DNA tests either for same reason.