cerebellar syndrome

I have been diagnosed with cerebellar syndrome and I have no idea what the long term outlook is .. It is late onset and possibly caused by a small bleed on the brain according to the neurologist, unfortunately I was that keen to be discharged from hospital I never asked any questions. I am seeing neurologist in a months time and also have an appointment with the endocrine team. Can anyone please give me any info on the future with this condition.

thank you

Debs

15 Replies

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  • Hi Debs

    Thank you for your question. Can I ask, what symptoms of cerebellar syndrome do you have?

    Best Wishes

    Harriet

  • hi harriet

    I was admitted to hospital with dizziness, tingling in my head, double vision when looking left and weakness in my left side. they said I have ataxiac gait?? cerrabella syndrome, some degree of muscle weakness and co-ordination problems. I am unsteady on my feet and often walk into things. I find it hard to read and certain lights eg very bright ot very dim lights confuse me and I have to concentrate harder. I also walk as though I am drunk.

    ps thank you for your reply :)

  • Debs, when I read your description, you could've been describing me exactly.

  • Hi Debs

    I am so sorry for the delay in replying. February's first reply below is exactly right. There are lots of different causes of ataxia, some of which are progressive and others not. Yours sounds as if it has been caused by an injury to your brain, that is the small bleed on your brain. The symptoms of your cerebellar syndrome will not deteriorate and as February said, may even improve over time.

    Good Luck for when you see your neurologist and I hope you get answers to all your questions.

    Best Wishes

    Harriet

  • Hi fellow sufferers !....I started with dizziness and unsteadiness etc about a year ago (I am 88yrs old man.) I have been through numerous tests - including MRI Scan. Finally diagnosed as suffering from ATAXIA - 'Loss of ability to control or co-ordinate ones movements'...I am advised to exercise as much as possible (not easy!). I have fallen several times, but I recognize, that with the use of a walking stick, and walking slowly but avoid stumbling along - bend my feet (toes included) to help blood circulation. Not to sit too long without have a walk round the house - from the kitchen sink to the front door! I've reached a conclusion that it's a do-it-yourself job!! I find that sitting down and making 'Peddling' movements with my feet (as if on a bicycle) will help blood circulation (and still watch the Telly!!) There is an ATAXIA society, with branches throughout the Country where fellow sufferers meet from time to time, to chat and perhaps learn of any progress in combating the problems. Best of luck everyone!...Bill Leach(Oldham, Lancs)

  • Dear Debs, I was diagnosed eleven years ago with Sporadic Cerebellar Ataxia (unknown cause). I have symptoms 24/7, gait/balance, dexterity, speech, swallowing. My ataxia has progressed over the years, albeit slowly. Due to yours being possibly caused by a brain bleed, I would think that it may not progress, but I'm only assuming. Maybe with physical therapy (physio in UK, as I reside in the States) yours may even improve over time! I use a quad cane to prevent falls (four years now), as I taken some pretty bad ones! I find exercises for strength and balance, eating as healthy as possible and resting when tired, very helpful! My best to you and all..., ;o)

  • hi February... thank you for your reply, I am trying to exercise gently and try to do little bits around the house. I find it frightening to go outside on my own as I don't seem to be able to judge distances and the blurred/double vision makes it difficult to see left. I have decided to take each day as it comes and make the most of the things I can do instead of concentrating on the things I cant. I am very lucky as I have a great family and friend network that are supporting me. I hope things get easier for you.

    Best wishes :)

  • Hello Debs ,

    I was diagnoses with Cerebellar ataxia a few months ago ,still not be given any more info .I just wanted to say hello and wish you well on your journey .Take as much help as you can and certainly from the medical profession .

    Best wishes .

  • Hiya ... thx for the mail :) it is in a strange way quite comforting to know that other people understand the problems this makes us face. obviously my family are worried about me but I would rather they not keep asking me how I feel today .. I find I would rather not be asked and if I m feeling extremely bad then I will tell them.. it makes life seem more normal somehow. good luck to you too and I hope you get the information and support you need.. I am lucky I have a great set of consultants and doctors to support me in these early days. I have started writing down questions to ask on my next visit in 3 weeks time hopefully this will help with my anxiety I feel at the min :)

  • Dear Debs, I'm looking into buying an Access Active Rollator (on-line), as then I can take walks outside alone (I go with my husband right now). It was designed in Norway, although made in China. I like it because it is more sporty then the usual rollator. Also, you can hold on with two hands rather than one with a cane. It also has a seat and basket. I mention it to you, as you said you're afraid to go outside alone. I feel the same way, so this may be the solution (I like stores that have carts to push, as I can hold on with both hands and feel very secure)! Thinking of you and admiring your positive attitude!..., ;o)

  • I too also like to push the trolley when my boys take me shopping .. I agree totally it gives u support :) and thank you for the advice I will look into it :) best wishes to u :)

  • I use my rollator all of the time in my bungalow. It really is such a BIG help.

  • Hi Debs1305

    I to was diagnosed with Cerebellar Syndrome over 20 years ago after an Encephalitis (inflammation of the brain).

    Speech,balance and general mobility are not good but with regular Speech Therapy,Physiotherapy and Excercise Classes I manage to stop the symptoms worsening.

    Best Wishes.

  • Hi Debs1305.

    You took the most important step in managing your condition when you got in touch on this forum.

    I have found the folk here to be friendly and their advice invariably helpful. The forum is properly moderated, so only 'good' posts get through. IE If someone posts something that is not medically sound, then the moderator will pull the post. This means you can trust what you find on this site, although a dose of common sense is also useful. Not everything will apply to you.

    One of the frustrating things about ataxia is that it affects everyone differently. Even when the symptoms seem similar, the way they affect people will differ. Also different is the rate of progression. I was only diagnosed with ataxia when I was 60 years old, but apparently had the condition since I was a pre-teen, so obviously the progression then was slow. It has now speeded up unfortunately, but for some folk once the condition appears it does not get worse.

    Best wishes, and do get in touch with a local support group if there is one - have a look at this page on the Ataxia UK web site for a directory of support groups in the UK. ataxia.org.uk/support_direc...

    Now, if the moderator disagrees with anything I have written here, then she will either delete the post or make a correction :)

  • A perfect post Wyndham! And thank you for your kind words!

    Best Wishes

    Harriet

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