I have idiopathic late onset cerebellar ataxia, still looking for the gene because other family members are affected.
My gp is sending me for an echocardiogram because an ecg showed up irregularity with my heart. I think it is all connected with fatigue which is my biggest symptom.
Does anyone else have this problem and, if so did you get any treatment ?
Hi coco - I have Sensory Ataxia - only started 6 years ago at the age of 77 - at the moment 3 neuro consultants at the Neuro Hospital - Queens Sq , London do not know why. I am getting very fatigued with some days nausea as well. I had an echocardiogram last year and a follow up just recently - which showed no alteration to last year - where it showed one of my heart's valves was leaking. No treatment required by all accounts - the echocardiograms were taken here in Bristol.
If you want any more info let me know.
Cheers for now - Doug Smith, Bristol.
When they were trying to figure out what was wrong with me.....my blood pressure was the first main concern...irregular...It would go really***dangerously high and I didn't even know it....200+/? I never had headaches, etc. just felt wiped out. I couldn't take the blood pressure pills that were diuretics. Bad affects from that. Dr put me on one that is not diuretic but relaxes blood vessels and it has worked perfect so far. Took some time but finally leveled blood pressure out. I try not to get out in the heat during the summer because it just drains me and makes blood pressure worse. I had the echocardiogram during one of hospital stays also. Since ataxia affects muscles, heart is a muscle so I figure if we get too tired etc that it might make blood pressure issues worse. I get tired real easy when I try to do what I use to do, takes me days to recoup. I hope you get some answers. I too have late onset. It has taken years but finally have a diagnosis.
Hi Coco, I had cardiac "ablasion" to repair a cardiac arrythmia that I was apparently born with. It showed up in my 30's, but didn't start giving me more trouble until after my second child (and last) was born (late 30's). I was diagnosed with Sporadic (idiopathic) Cerebellar Ataxia 10 years ago (at age 49), although I believe I had small symptoms starting about 8 years before. My heart has been fine since the repair, but my ataxia didn't show up until after, so I don't know if this is relevant to you. I do get tired easily, although that's the nature of ataxia I believe. I agree with your doctor, as an echocardiogram is a great diagnostic tool for the heart! My best to you..., ;o)
I too was told that I had a heart murmur after my children were born but it was not followed up. I have had various symptoms all my life which I can now put down to ataxia. I don't want medication unless it is considered necessary because the side-effects are something else to cope with.
I attend the ataxia clinic in Oxford , so will ask their advice before I accept any treatment.
Hi Coco, I have a heart murmur also (leaking valve), but the cardiac arrythmia that I had the ablasion for was different. I've had the heart murmur all my life, but don't have any problems with it. The arrthymia I use to have was a different story, as that gave me tons of trouble! My doctor did try meds for the arrythmia before I had the ablasion, but, yes, I had side effects big-time. Fortunately, the cardiologists were able to find, and get rid of the arrythmia... ;o)