Patience is a virtue 😂

[claire01]

Sca 48 is the genetic ataxia I have, after 8yrs of tests any one else have this 🙈

[wobblybee]

🙂 On Facebook Ataxia Support Groups...I’ve seen mention of SCA48 being diagnosed

[claire01 in reply to wobblybee]

This condition is so confusing and tiring 🙈

[wobblybee in reply to claire01]

I totally agree..I mostly feel as though I’m weathering a storm

Sometimes a downturn can last for days at a time, and then for no apparent reason ..pass 🤷‍♀️

But..then a good spell can come out of the blue, and all feels right with the world 🙂

🙂 I don’t attempt to plan ahead..just take it one day at a time

[nigelrheath]

wow! Your own ataxia number. I have to share my boring old 6 with others. 😢 I expect you have to put up with the same sort of issues and one of those is our medical inability to treat ataxia seriously. Like wobbly bee says the only way to cope is one day at a time. On bad days it’s okay to be sad. On good days wring out as much happiness as possible.

Nigel

[Tallguy101]

Hi Claire I was diagnosed with ataxia in 2007. Up until yesterday I was told it was of unknown type but yesterday on an annual visit to my consultant. I was informed that it is definitely sca48, which has thankfully very slow progression. It's just nice to get a positive diagnosis.