Cerebellum ataxia

[Panthava]

Hi My brother had been diagnosed with cerebellum ataxia. They think it was caused by a virus. It has effected his speach, walking, balance . Has anybody else experienced this from a virus ?

[Larobby]

What virus was it? My brother has cerebellar ataxia too, but it was caused by lymphoma. So sorry about your brother, make sure he does his physiotherapy, especially if it’s a recent diagnosis. My brother’s speech has improved enormously with speech therapy, although the other symptoms haven’t improved much. This community is great for giving help and support.

[Panthava in reply to Larobby]

Hi

It was Epstein Barr virus.

No speach therapy online physio at the moment.

Glad to hear your brothers speech has improved.

[Panthava in reply to Larobby]

How long ago was your brother diagnosed?

[Larobby in reply to Panthava]

The diagnosis came too late for my brother as the lymphoma had already done lots of damage. He has been having symptoms for about 4 years, but we could not find a cause until 3 years ago when his lymph nodes became visibly swollen, and even then it took months before he could start chemotherapy. However, even in such a bad situation, the physio and speech therapy really helped him. I completely understand how you feel, it’s so hard not to have an answer to your questions or know what will happen next. Don’t lose hope is all I can say.

[Panthava in reply to Larobby]

Ahh so sorry to hear that. Glad he managed to have his therapy to help him .

I wish him better x

Thank you

[Cupcake12345]

I have cerebellum ataxia too, I suspect from mosquito bites I endured in Italy 4 years ago. Doctors are still investigating but I have deteriorated rapidly over the four years. August 2016 I was badly bitten, September 2016 I went to the doctors for slurred speech and October 2016 it was diagnosed by MRI. Now I can’t walk or anything, I cannot go out by myself and spend most of my time in a wheelchair. It’s very frustrating waiting for doctors to figure it out while I deteriorate fast. Scalp acupuncture helped a lot, but it has to be a really good practitioner, I receivedp PPP Rooppppppppppppp

[Cupcake12345 in reply to Cupcake12345]

Sorry I had a phone call from my Dad, my Mum died Monday so I had to take it, my phone replied and posted nonsense!

The acupuncturist I recommend is Roosin Golding in London. I didn’t deteriorate so badly until I stopped seeing her.

[Panthava in reply to Cupcake12345]

Wow you have really suffered. I pray for you to get better xx

[lindadoc]

Hi, my 23 Yr old son has cerebellar Ataxia, Drs not sure of cause, could have been small lesions on cerrabella or treatment he received earlier in his life for other lesions he had. His walking, speech, balance, coordination and his eating all affected.

[Panthava in reply to lindadoc]

Hi

Is your son receiving any treatment now ? Some Help with recovery?

[lindadoc]

No treatment, got an appointment with a neuroligist next week, first time in a year. Through the yrs he's seen physio, SLT, OT but nothing lasts. He's a member of the west of Scotland ataxia support group, which is good.