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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:

Hello Issy, I read your post and wanted to ask: have you had a blood test for a celiac panel yet? I was having seizures about every 3 weeks (sometimes every 2) for months and found out this past summer that I tested borderline positive for celiac. I have late onset cerebellar ataxia that showed up completely out of the blue 2.5 years ago with severe walking issues, slurred speech, judgment and balance was off, body and head tremors, and it was so scary. I thought I was losing my ability to walk completely… It was later on that I developed seizures so I stopped driving. Fast forward to last July when I got tested. I started a gluten free diet Aug 1 and I have not had a seizure since! It’s too early to say whether or not I actually have gluten ataxia, but I am thrilled to say that I’ve recovered with my ataxia between 90-95% and feel like I have been given my life back. I still walk with a walking stick when I need to and have a slight “shimmy” to my walk, but I keep improving, which has really surprised me. I have to stay gluten free for life and am perfectly okay with that. The key is to NOT start any gluten free diet before testing, or it will mess with your true results. I don’t know whether it will help in your case, but it’s certainly worth being tested for it to rule it out completely…it does sound like you’re on the right track and using the scooter will certainly help with the pain from walking. Best wishes to you!

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Hi Cirrus
Many thanks for your post. Yes I have recently had blood test to eliminate celiacs which was negative. As I have been on medication for epilepsy for 60 years now I should imagine this is what is causing ataxia in my case but don’t really know…
It’s great to hear how much your change of diet has helped you - well done!
My main problem now is quite severe pain down my spine when I stand for more than a short while. Don’t know at present whether this is ataxia related it’s difficult to know what symptoms to expect! Apart from that I luckily have no problems with sight or speech.
My favourite activity at present is an Aqua Aerobic class I try to attend weekly once in the water I can exercise as well as anyone.
Take care. All best wishes. Issy

:slightly_smiling_face: It’s wonderful to know you have such a good improvement …especially from a borderline result.

Recently, I read about someone here in the UK, who prior to having the TG6 test for Gluten Ataxia, spent sometime omitting gluten from her diet and had good results with ataxia symptoms. Her Specialist Neurologist decided it wasn’t in her best interests for her to go back to basics and do a gluten challenge test…she’d proved going free for her was beneficial.