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Hi , I have had epilepsy , severe attacks since I was 18. I’m now 77! The attacks
, luckily only occur once every year or two as the drugs work well. About 4 years ago I started to have balance issues which have gradually worsened… I was referred to a consultant neurologist, had a general examination and 3 MRI scans but no conclusion was reached. I did eventually change my epilepsy meds. but no change.I became more concerned as my balance deteriorated. This year I changed consultants.She is Head of Movement at the hospital. She showed me the scans I had had previously and explained that I had a type of Ataxia , so far type unknown. I am waiting for a follow-up appointment.My main additional problem is pain down my spine etc when I try to walk too far. My mobility scooter is great though!

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Thanks for sharing and welcome. I’m 80 in November. I have idiopathic CA and given up testing. I am on pregabalin for low level pain which suits me. It doesnt suit everyone though. Stay safe and don’t forget to smile x

Hi Issy :slightly_smiling_face:

Again…welcome :wink:

Welcome Issy. Look forward to your posts.

Similar thing happened to my brother. I have sca42. When his symptoms began a few years ago he was tested and he does not have sca42. He had also been on the same epilepsy drug for many years. The neurologist changed his prescription. He is 73. I assume he has an acquired ataxia. I don’t think he is progressing much.

Hi Susan
I’m still waiting for more ideas of what type of Ataxia I have. Just don’t know what the future might bring but I don’t expect any of us do. Do hope you and your brother are ok.

Hi Susan🙂
Initially I was diagnosed with Epilepsy. I’d been having DeJa Vu episodes, and had 1 seizure in my sleep.

Various medications failed to subdue DeJa Vu…I never had any further seizures…but went on to collect ataxia related symptoms.

Finally I started having unexplained falls…this turned a corner for me and I had a Tilt Table Test, followed by an MRI.

Cerebellar Atrophy was visible. That, along with accumulating symptoms, led to a diagnosis of Idiopathic Cerebellar Ataxia.

What about this heat wave ( UK) ?
Is it affecting everyones Attaxia symptons? My tingling feet and legs are much worse at present. All we can do is carry on regardless and keep cool.

:hot_face: It’s a definitely hotter than I’d like it to be …
Keeping in the shade, or indoors with fans ( no A/C ) has been the best way of coping day to day.
Last night…I had one the fans in my bedroom and it definitely helped.

My feet tend to either be toasty hot or icy cold…and during the previous hot weather I resorted to ice packs wrapped in towels to cool them down…

I find that the humidity affects me more than the hot temperature although I’m not real fond of real hot weather. :fire: