Cerebellum degeneration

[Dsadk]

Hi,

Have any of you, heard about a cerebellum that stoppede degenerating ?

Or is it nor normal that the disease will pause or stop ?

[sunvox]

What disease do you mean? Ataxia is a generic term like cancer. There are many different types of cancer and each has very different problems and solutions.

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Yes, there is evidence it may be possible to stop or slow degeneration in many types of ataxia and not all people with degeneration of the cerebellum degrade at the same rate.

[Dsadk in reply to sunvox]

Hi,

Thank you for your answer. Our daugthers cerebellum as since the MRI in february to the one made in july, showed that her cerebellum has stopped shrinking. She haven’t got a diagnosis yet, they have tested her since september 2017.

We just wanted to hear, if this i ‘normal’ or anyone else has experienced this ?

[february]

I've had ataxia (due to Niemann Pick C1 disease-I found out the cause in 2017) for 20+ years. My ataxia has progressed over the years, although slowly I've been told (per my neurologist). I find it fascinating that your daughters ataxia has stopped! That's great!!! My best to you..., ;o)

[Dsadk in reply to february]

Thank you so much for your answer. Our daugther have had the symptoms for 1,5 year, and it has deceloped really quick. In 6 months she lost her walk, crawl balance, bad eyemovement and so on, but the last 6 months it has paused 🤔 And no one have heard anythin like it , that we have talked to. But we cross for the best 🤞🏻🤞🏻🤞🏻 🙏🏼🙏🏼

[Senoja]

I was “diagnosed” with cerebellar syndrome in 2007. Told it would get better in a year. It didn’t, it got worse. Then about 3 moths ago I noticed many improvements. For no reason. Have been working on the theory that the “diagnosis” was just mistaken, in other words, it’s only 10 years off. Of course it means it’s hard work dealing with muscles which haven’t been used for so long .........

Best of luck!