Hi My name is Stuart i live in Glasgow, and i have recently been diagnosed with Cerebellar Atrophy Ataxia, no body in my family seem to have any of the symptoms or Ataxia.
I on here cause I'm really new to this and want to know more especially late onset Ataxia. The problem I'm getting is very bad balance and walking problem, i am also finding day to day life more and more difficult.
I barely drink alcohol about a bottle of red win over 2 days at the weekend but I'm sure my neurologist thinks my condition is caused by alcohol and feels I'm not exactly honest with him about my past and maybe my present lifestyle, is there a test that can prove him wrong I don't know what questions to ask as this has became a shock to myself, i am also frightened that my partner will just get up and leave me because i cant do thing like i used to.
Now for something completely different, I was recently refused a tandem skydive for charity because of my balance and leg strength particular in the landing process, but this is something that on my bucket list and i would really still like to do this, does anyone know of a place that could accommodate my disability in Scotland preferably but I'm willing to travel UK wide.
I would also like to ask if there is a girl called Laura who takes swimming lessons on at Easter-house Glasgow could you please get in touch I would like to chat more about our conditions.
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Hi Stuart .... your GP would have a record if you'd been abusing alcohol... as an ex alcoholic I know of lots of medical complications and symptoms you would have experienced which would need medical treatment and care... so I dont know why your neurologist is pointing the finger at you since he will have your medical history available... tell him straight that you are just a regular drinker - like most people - so you are confused as to why he is suggesting this ??? Even if you were an alcohol abuser, it can t really be proved that this has caused your condition... its a contributor. Its also a process of elimination if you've not inherited the illness... so they are looking at your lifestyle .... Be firm with him ... he's looking for an easy answer for your prognosis. take care Caron
Thank you carron I did already explain this to my GP and just seemed to shake his head.
Take care
Hello Stuart,
-just some thoughts for you, coming from Dr. Susan Perlman's very helpful and informative booklet entitled "Evaluation and Management of Ataxic Disorders: An Overview for Physicians" (US publication) -- firstly, have you had an MRI of the brain? Secondly, she mentions that "of patients with late-onset cerebellar ataxia, 25% will go on to develop multiple system atrophy (MSA), with the emergence of symptoms of L-dopa-unresponsive parkinsonism and autonomic failure." And so a question for you is this -- you wrote that you are "also finding day to day life more and more difficult." Would you kindly elaborate on some of the additional symptoms which you have? FYI -- Taken from page 17, "...if you are experiencing orthostatic blood pressure, lower motor neuron bowel and bladder dysfunction and abnormalities in testing for heart rate variability, tilt table, sympathetic skin response/sweating and cardiac I-123-MIBG-SPECT. REM sleep disturbances or erectile dysfunction may precede ataxia by 5-10 years. Obstructive sleep apnea and stridor are common.
Another test she recommends if MSA is suspected is a Dopa-PET scan to confirm basal ganglia involvement -- although if you've already had an MRI done, hot cross bun signs in pons and hyper/hypo-intensities in putamen correlate strongly with MSA, she mentions. One final note -- "The presence of dementia, ophthalmoplegia or chorea suggest something other than MSA."
And so you see, the cause of late-onset cerebellar ataxia is very, very difficult. And for your neurologist to simply blame it on alcohol consumption, particularly if you have additional and unexplicable symptoms, is ludicrous, I think.
Firstly thank you so much for your reply to my post.
I am a UK citizen so I'm not sure of how far Ataxia is in the US but the paper you refer to by Dr. Susan Perlman sound very useful and interesting is there somewhere i could get a copy or download?
Now to try and answer your Question, yes i have had my first MRI scan that is how my Ataxia was first diagnosed as for struggling from day to day my walking has became so bad I'm using a wheelchair more often also i have a tendency just to drop thing's (unexplainable), i fall most daily, i feel my eyesight has deteriorated badly though i thought this was an age thing.
I suppose I'm just trying to separate symptoms i have regarding Ataxia or is there something else going on.
One more thing does Ataxia shorten life expectancy and should i be looking to get things n order.
Yes, Dr. Perlman's booklet is available for free, online at the National Ataxia Foundation -- here is the link: ataxia.org/pdf/Evaluation_a... You'll see that is was published in 2007.
Thank you for the additional information. Yes, trying to separate symptoms is very frustrating, isn't it?! And that's what makes defining the type so very difficult in those non-hereditary types, such as yours. The best that the doctors can do is to play the game of elimination through testing, testing and more testing -- which can get expensive and be emotionally draining for the patient...
In response to your final question, no -- personally, I feel that a diagnosis of Ataxia doesn't necessarily shorten life expectancy...rather, it's the COMPLICATIONS that may surface in an individual. My family has an undefined type of hereditary ataxia, and this is what I've seen in the loss of my affected relatives. Acceptance is key.
And so yes, our support groups in the US strongly suggest that you look into future financial planning. I'm attaching an info sheet from the US National Ataxia Foundation -- of course the laws may differ in the UK, however the ideas are similar: ataxia.org/pdf/FinancialPla...
I would think that your UK ataxia group has similar info for you. Best of luck to you on your "diagnostic odyssey," as we call it over here.
Hi Stuart. I am from Cumbernauld near Glasgow and I too was diagnosed with Cerebellar Atrophy/Ataxia. I can relate to your story of blaming alcohol for ataxia. I was initially seen by a Neurologist from Glasgow's Southern General (now the Queen Elisabeth hospital I believe). I too was asked about alcohol consumption and felt that he was blaming this for my ataxia. Its very frustrating. After a few years since being diagnosed I now have a further diagnosis of Cerebellar Atrophy and Ataxia with 'Cerebellar Cognitive Affective Syndrome'. CCAS affects thought processes, reasoning, memory, emotions and other symptoms. Hope you find the right answers to your ataxia. There is (or was) an Ataxia help group in Maryhill. I can find more information for you if you wish? Good luck.
Thanks for the reply it's good to see I'm not alone with the whole alcohol thing. How are you now and I'm not really sure on ccas. Who did you see at the southern and was your diagnosis late onset, apart from the alcohol theory did they come to an inclusion what caused your diagnosis.
Hi Stuart. My consultant was Dr Gorrie at Southern. I was diagnosed with Cerebellar Atrophy in 2010. CCAS was diagnosed around two years later. I guess that my ataxia is late onset as I began to notice changes in my coordination and balance around 2008. I would have been 47 at the time. Not sure about how long I may have had CCAS for though. In fact I'm confused about the whole thing. I have not (so far) been consulted about a cause.
No need to be sorry Stuart. Thats what the forum is all about. Ask anything you wish. Ataxia simply means 'lack of order' or in our case, lacking in balance and co-ordination. Atrophy means shrinkage. So Cerebellar atrophy is shrinkage of the 'cerebellum'. Ataxia will occur as the result of the atrophy. The letter to my GP from Dr. Gorrie explained that I had 'Cerebellar Atrophy' and my GP said I had 'Cerebellar Ataxia'. Same difference Stuart. Hope my explanation is not too complicated?
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