Recently diagnosed with possible sca: Hello... - Ataxia UK

Ataxia UK

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Recently diagnosed with possible sca


Hello everyone. I'm a 45 years old dad with 2 lovely daughters aged 16 and 13. My grandmother had weak legs and was immobile around the age of 55-65. My mom had the same problem. They were both quite big so most of us thought that was the reason for their weak legs and they were never diagnosed sadly. My mom passed on at the age of 68 but she had other complications as well like kidney failure and diabetes. I noticed some weakness in my legs maybe a couple of years ago and it got slightly worse the past 6 months. Did a complete medical check up and everything was fine but was asked to see a neurologist for my weak muscles. He then ordered an MRI. The findings revealed a mild atrophy of the cerebellum and brainstem, associated with prominence of 4th ventricle. Faint linear hypertensity is seen in midline of pons. Findings may suggest underlying spinocerebellar ataxia. My only problem is my balance and touch wood nothing else. Anyone else with similar experience. At this point of time my main worry are my girls. Thank you for reading my long post.

8 Replies

You should contact the Ataxia Centre, look them up on Google, they will put in touch with the best course of action.

Thank you. Will do that.

Yes I would too because they are experts about the different types. If you have a neurologist they can refer you or your GP can.

Try to stay as active for as long as you can. Until you have tried something don’t assume you can’t. We are all so different and find what works for you x

Thank you Litty. I've been trying to get as much info as I can on this desease. Everything is still so new to me. I've never heard of this until a week ago. I'm Seeing a 2nd neurologist this weekend. The one that diagnosed me was very unhelpful and unsympathetic.

Thank you Litty. The encouragement means a lot to me.

Dear Ginger-Roxy (cute name!), First of all, a HUGE welcome to this site! I reside in the USA, but find this site very helpful! I have Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7), diagnosed 13 years ago, although I had extremely minor symptoms starting about 8 years before diagnosis. Although, over the years, I've had genetic testing for the known recessive and dominant ataxia's, as well as most recently exome genetic testing, all was negative (recessive and dominant) or inconclusive (exome). Therefore, I have no idea why I have ataxia thus far. I understand your concern about your children though, as I have two grown children and three grandchildren. My advice is to exercise for strength and balance and eat as healthy as possible. My best to you..., ;o)

GingerRoxy in reply to february

Hi February, thank you for taking the time to write this. Ginger and roxy are the names of my dogs actually. I saw my neurologist yesterday. She too advised me to eat healthy and exercise daily to try to delay further progression of the symptoms. And of course to never stop praying for a breakthrough treatment for ataxia. So I'm just trying to not think too much of it and try my very best to follow all the advise given. Take care and thank you.

KUDOS to you!!!

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