Question about condition

my husband started taking seizure like episodes when he was 25 also had short term memory loss and extremely bad tremor . They stopped ten years later but still has the bad tremor . My daughter started taking same episodes at 13 slurred speech head shaking unable to walk lasted a minute sometimes taking up to 8 a day but no tests showed up anything back and forward to doctors for 15 years . My son also took same turns but had bad tremor my youngest son has a lot of sore muscles and extremely sore feet and headaches and tiredness .. Now my daughters little girl who is 6 gas started taking them walking as if she's drunk lasts a minute .. My sons has three children and the two boys have started taking them and my little granddaughter is two and isn't walking yet . We were at Southern General with my granddaughter this week and the professor when we described this new straight away he said it was episodic atAxia type one don't know other names they took a gene test from my daughter and wants to see other grandkids does anyone know if this condition affects walking also sore feet and muscles thanks and I stay in Southlanarkshire scotland . There's loads of questions we now think we should have asked but at the time you forget

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  • Dear "Helen"

    I read your note with difficulty because you do not use punctuation. But from what I made out, it seems like something deeply genetic is going on. I can understand your fears. Doctors, sadly, often do not know this disorder well. You might want to turn to one who does. Perhaps its wise to call an ataxia group for a recommendation. Good luck. In health, N

  • Thanks just learning how to work this laptop x

  • a known challenge!

  • Hi Helen😊

    If your granddaughter is having genetic testing, the result my be a diagnosis for the rest of the family. With so many showing various worrying symptoms, there could be particular interest.

    Cerebellar Ataxia effects people in various ways, most commonly balance and limb coordination appear noticeable at first. The other symptoms you mention are typical too. But, so many Neurological conditions have symptoms that 'overlap'. Diagnosis can be difficult.

    It's very hard not to let thoughts run away with you and 'overthink' all this, I've been there myself.

    If you want to read about Cerebellar Ataxia log onto ataxia.org.uk and ataxia.org both have helpful information.

    I don't know where you live but, there are Ataxia Centres both here in the UK and in the US. Here in the UK referral is by GP.

    Sometimes genetic testing can take an inordinate length of time, I hope you get some answers 😊xB

  • Although u say about ataxia....you may want to see a consultant neurologist. ...because the shakes...tremors...sore muscles...headaches and tiredness are also signs of an essential tremor which can be hereditary...but with a dose of beta blocker it will control it...my husband has essential tremor but he also has wernicke's encephalopathy which gives him symptoms of ataxia also...maybe look into it...good luck.

  • Thanxx

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