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1

Hi!

I'm a student studying Biomedical Science at the University of Sheffield and I'm currently working on a project about Cerebellar Ataxia.

If you (or someone you know) has this condition, I would love you to get in touch so I can find out the impacts on an individual's life.

Your stories will remain anonymous, I would just like to hear about the condition first hand!

Thank you!

2

I would love to help you. Please let me know how you want to do it. My email is litsmith@mac.com : )

3

Hello - WOW

I was in the Royal Hallamshire Hospital, Ataxia clinic,(Marios Hadjivasilou), last week !

I have CA,

Have founded a Ataxia group in Wales ( with amazing positive feedback, from Health boards (Local/country wide as well as pharma)

(most related org. have heard of me !

I am also known as the "Rare disease Warrior" and present on patient engagement in many countries (from wales, Uk, Europe and even global)

Google has alot of info, about me Alan- Wales - raredisease - Wales ...............

twitter @alanROYGBIV

Please inbox me, for more information

I look forward to further communication

Alan Thomas

4

I have Ataxia as a complication from Hereditary Spastic Paraplegia - I would be more than happy to help out! My email is ■■■■■■■■■■■■■■■■■■

Brian

5

I would love to help out. My brother also has ataxia. I now have breast cancer too. Difficult to treat without making ataxia worse. You can reach me at ■■■■■■■■■■■■■■■■■■■■■■■■

Dee

6

hi,

I was diagnosed finally after 6 months with cerebellar ataxia.i don't want to bore you with details about it. how much do you want to know? my e- mail is ■■■■■■■■■■■■■■■■■■■■■■

7

Thank you everyone for replying so fast!

I've sent everyone so far an email and I'd just like to say how appreciative I am for you to help me with this project :)

Looking forward to hearing from you soon!

Becky

8

Hi, if you’re still looking for people I’m messaging you my email address. My cerebellar ataxia was caused by a virus ( or possibly an autoimmune disease )

9

If someone can benefit from this, I`ll gladly help, my email address is; ■■■■■■■■■■■■■■■■■■■■■■■■

10

Can Ataxia be caused by VIRUS ? Never knew that.

oblidioblida said:

Hi, if you're still looking for people I'm messaging you my email address. My cerebellar ataxia was caused by a virus ( or possibly an autoimmune disease )
11

Also, I am more than happy to help you in any way that I can. You can contact me at ■■■■■■■■■■■■■■■■■■■■■■■

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  1. Hi, In April of 2013, I went to work, ate dinner and went to bed, the next morning I had trouble walking! It happened that fast! In May of that year I flew to Florida to see my cousin and she noticed I was not walking right , it was not too bad so I waited until 2014 and saw a neurologist in my area which is Poughkeepsie, N.Y. He checked me out with a brain MRI and a Spine MRI and needles in my legs, all results negative, he had no answers, kept on going to him and everything he would say~~don't fall and I will see you in two months, well lasted until the end of 2014! I had enough of paying $50.00 a visit! In 2015 I found another neurologist in Kingston, NY who was very good. He looked at all my records and said that the other doctor did not do enough, he was thinking MS, so I had a spinal tap,more bloodwork,more MRI's and a four hour evolved potential test for MS~~all came back negative, so he sent me to a professor at Westchester Medical, who I did not like from the beginning~~another MRI of the brain, this time with contrast dye and another spine with contrast, still no answers, been going to P.T. Just by chance one day I sitting in the waiting room and saw another doctor that seems like a nice person, he was under the professor, I made up my mind that day I was going to start seeing him, he spotted a spot on my brain scan the professdor did not so he presued it, he thought Ataxia, so he asked me would I go see an ataxia specialist at Columbia Presbytrian in the city, I went he diagnosed me in a half hours with Cerebellar Ataxia and now I see the doctor in Westchester, take medicine, go to P.T. and they still do not know what caused it.,they were going to do generic testing but cannot do it in the State of New York! Meanwhile my husband is not well, we think Colon Cancer and life goes on! E-mail is ■■■■■■■■■■■■■■■