Patrick moloney: Hi im ive been diagnosed with... - Ataxia UK

Ataxia UK

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Patrick moloney

Killarney profile image
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Hi im ive been diagnosed with ataxia brain damage i was i had a fall some 7 years ago struck my head ct scan was clear but still had pain in my head i took a fit where where i had no control over my body was scary i was confused was wondering if any 1 here experienced this uncontrollable frightening experience what medication working for you

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Killarney profile image
Killarney
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wobblybee profile image
wobblybee

Hi Patrick, welcome 🙂 I’m so sorry that happened to you, I can’t imagine how scared and confused you must have been. So you have Acquired Ataxia, mine is possibly genetic, and I’m still being tested 🙂

But, despite the different diagnoses, we both still probably have very similar symptoms 🙂 I take CoQ10 (Ubiquinol) and a multivitamin, but nothing as yet for ataxia symptoms 🙂 xB

Cubsfan profile image
Cubsfan

I suffered head trauma in an accident 3 years ago. Woke up a week later and was paralyzed from the waist down. Completely and absolutely terrified, wondering how I would continue with loss of movement in both legs. I was 54 at the time and had led a very active life. 6 weeks in hospital numerous tests, MRI's, CT's, etc. I was diagnosed with ataxia. Feeling and slight movement returned to my legs after 6 weeks and was released to a rehabilitation facility where I spent the next 8 months working very hard at physical therapy. I can now walk with a 2 wheeled walker, somewhat. The dr's prescribed painkillers, the physical therapy was very painful to me, Baclofen for muscle cramps and shakiness, folic acid, B1, B12 and multivitamins. All of which I take to this day as well as continued exercises 4X/week. I do feel as though I get a little better, at least not any worse every month. At least life is worth living and with the help of some wonderful friends I am now able to live on my own and occasionally enjoy "aqua therapy" swimming at the warm salt water beach near my home. I've found a positive attitude works wonders and I wish success, health and happiness in the future to you!

4ever2gether profile image
4ever2gether

hi Killarney,I had that feeling a half year ago, I was diagnosed some 4 years ago,and recently I have found a medicine named trehalose produced by Bioblast Pharma Ltd can cure SCA3,although yet it is testing,but I still want a try.Do you have any suggestions for me?Thanks sincerely

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