Cerebellar atrophy info

[Mike]

Does anyone know anyone with cerebellar atrophy? My 75 year old sister has, after years of tests and examinations, just been diagnosed with this disease. I have read a lot of info on the www but like to hear of others experiences. Many thanks Mike

[Ellie]

Hi Mike,

Sorry to hear of your sister's diagnosis - is her diagnosis one of stand alone cerebellar atrophy or in conjunction with ALS?

It's more common to have frontotemporal atrophy alongside ALS, but that's not to say that cerebellar atrophy doesn't happen.

I'm sorry I can't be of any help.

Love Ellie.

[Mike]

Thanks Ellie. Scan only shows cerebellar atrophy, no ALS. Have noted similarities between the two conditions. Have meeting with local authority rep to explore support possibilities Mon, so may find out if they can help. Having MND in country side seems more complex than life in urban areas. Sister still driving but what happens when she cannot drive. GP says she has to move house, but that is fraught with problems.

[Ellie]

Scan only shows cerebellar atrophy, no ALS.

Was your sister told of a likely cause for her condition Mike, no mention of ataxia or other disease?

I'm just wondering where you both might get the best and most appropriate support, not that you can't hang out with us 👍

[Mike]

Thanks. My sister was not informed about ataxia or any other cause. My understanding is that mnd is a global heading covering more specific diagnoses. I am searching for answers to the the multifactorial presentations of this condition. To this end can I ask, is the mnd consultant at Bristol private only or taking nhs patients. I only ask because I feel she should be reviewed by someone who is a specialist in these conditions instead of relying on the diagnosis of a brain scan and a GP interpretation of the results. Best wishes Mike

[Ellie]

I feel she should be reviewed by someone who is a specialist in these conditions instead of relying on the diagnosis of a brain scan and a GP interpretation of the results.

Agree 100% - such a diagnosis needs to be formally made by a Neurologist.

When you said the "scan didn't show ALS", were you referring to the MRI? (MRIs don't typically show up ALS) Has your sister had an EMG test, as far as you know?

I would seek a referral to the Bristol MND Care Centre, by the GP who has all your sister's test results, and go through the ALS diagnostic process to find out if she has signs - there is something called 'ALS Plus'.

Best wishes to you both.

[Mike]

Thanks for that. Will pass on that information.