Shortness of breath

[brummie62]

My name is sue I have cerebellar ataxia SCA1 I starting to get shortness of breath it very painful I seeing my GP Monday. Any one have these problem

[Sharon_g]

Yes I got very bad also have e Sca1 I am going for test this week hopefullyill find out what the problem is

[anihol]

Yes being tested not sure of cause at the moment

[Mermaidia11]

Hi Sue

I get this too regularly, and it is debilitating and tiring. With so many other things to mention, I have not addressed it with medics, so would be interested in their opinion when you have spoken to them.

These days, I just try and power through it, or rest and have been exercising a little bit more to strengthen my muscles, as they feel really weak

[february]

Dear Sue, I breathe very hard (no pain though) at times when trying to do things as it takes so much effort (although I have ataxia, it's Sporadic Cerebellar Ataxia, not SCA1 like you have). I see a cardiologist yearly ( for a past cardiac surgery I had) and recently had an EKG, which was fine. I think it's a good idea to see your GP. Hopefully all is well! My best to you..., ;o)

[sylviagreenhalgh]

I am breathless when it is humid or going from warm house to cold. I have been diagnosed with COPD ( Chronic Obstructive Pulmonary Disease) caused by smoking and damage to my lungs for TB I Had as a child so these things aren't always linked to CA which was diagnosed 3 years ago. I have trouble swallowing, speaking and using my hands. I keep exercising and the community neurology team were brilliant as I had physio, a speech therapist and an OT to advise me on changes I could make to the house. so I hope the doctors visit goes well all the best Sylviax

[glenandgerry in reply to sylviagreenhalgh]

'Community Neurology Team' sound great. Whereabouts are you? We don't have anything like that here in Hampshire, UK.

[sylviagreenhalgh in reply to glenandgerry]

am in South London .there is such a variety in provision. Sylviax

[Sharon_g]

Hi Sue I just had test done my results is due on Thursday. Also my neurologist said it's such a effort for us to walk and speak that's why, our efforts is thousands time s more than the normal person it sort of make sense. I am knew Medicine now so I will keep you posted. Lucky mine is not hurting

[dadracer71]

I am in Arizona U SA Anand I am undergoing testing for SCA1. I have soreness of breath with everyone. I am very interested in what the doctors over have to say.

[brummie62]

I developed Af heart condition which was extremely painful indeed I had corrected but I do get extremely tired I getting so much pain I been put on another pain killer for short while. I waiting to go back to the pain relief clinic. I have tell people I not drunk I suffer from dysphasia which effects my speech I went through intense speech therapy learning how to speak.