Cerebellar Ataxia

[AtomicBubba]

Hi I’m Gemma and I’m 31 years old. About 2 years ago after a lot of hospital visits and scans etc.. I was finally diagnosed with severe cerebellar atrophy (ataxia)! Im just waiting for the results of my dna tests to see if they show what lies ahead?? Anyone going through the same thing it would be great to speak to someone 😊

[golfingsue]

just going through same thing for 18 months.they have just said ataxia.scans are all normal,now waiting for EMG & nerve conduction test.still waiting for genetic test,can`t get appointment till jan 18.everything is so slow.no treatment & just getting worse with legs &balance.so frustrating & feeling let down

[AtomicBubba in reply to golfingsue]

What’s are they going to do? Had my dna test done over year an half ago still waiting results! My consultant doesn’t get it I know there’s no treatment (I’m not getting my hopes up in that respect!) I just wants some answers on what to expect!! I’m the same things are getting harder and worse 😢 do you have problems breathing normally??

[golfingsue in reply to AtomicBubba]

I agree entirely.breathing ok at the moment

[AtomicBubba]

I’m getting really breathless, have been for ages and they’ve done the usual tests and they’re normal so they think it’s linked to my ataxia.. do you work?

[rankin1st in reply to AtomicBubba]

Hi check out guyb's thread about 14 responses to his initial post on lung. Breathlessneaa can be related to aspiration. have they done a x-ray CT or echocardiogram to check out your lungs you should have one every two years as someone with Ataxia apparently more details of more knowledgeable people than me on the thread.

My hubby only had a slight crackle eventually discovered lung problem on scan but took a while to find so ask for a X ray or CT of your chest/lung

[T1abj]

Hi AtomicBubba, I have Cerebrellar Atrophy, is that the same as Ataxia?

[AtomicBubba in reply to T1abj]

Yes

[Pineapple12]

Hi AtomiBubba

I was the same as you after 2 years (I'm 46) finally diagnosed with SPG7 with Ataxia including cerebellar atrophy.

I had MRI and PET finally referred to a Ataxia clinic and had gene test to get type.

Currently on baclofen but still use a walking stick.

Basically I'm trying to stay positive and making it up as i go along!!

This is a great place and you will get loads of help and support. Always remember you are not alone there is always someone here x