Anyone been diagnosed or heard of 'Cerebellar Cognitive Affective Syndrome'

I can't seem to find any information on this condition on the Ataxia UK site? I would just like to know other peoples thoughts on this. I've read a little about it on other sites but found the info a bit complicated and confusing. I believe the condition can be due to some malfunctions in the cerebellum but not too sure of the extent.

[Willowpuss]

Only recently my GP suggested an affective problem I get occasionally was. Caused by aquired ataxia.

[silkwood]

HI Iain

Luckily I don't get any problems with the cognitive sides of the brain but there is a huge gap between the thinking and the physical doing.It leads to a lot of mental anguish as I still think I can do things but the body thinks and does differently.

The MRI taken four years ago showed Cerebellar Degeneration but I have to say I am confused by the whole thing.We seem to have most of the same symptoms but there is a huge variety.I do not feel tiredlike some others on this site but I have no mobility or speech left.Let me know what you find out.

Marie

[Hidden in reply to silkwood]

Will do Marie. Sorry to hear that you have no mobility or speach. I still have some of my mobility and my speech isn't too bad. Take care. Iain.

[jomo50]

Hi Iain

I was diagnosed with cerrabeller ataxia 6 years ago. Like the previous respondert, Marie, my speech is now vety poor, although i can still walk although not as well as i like. My vision is also double. I try and exercise via exercise bike and treadmill. Like the other respondent, let me know if you find anything out.

John

[AlyfromNY]

I was diagnosed with Cerebellar Cognitive Affective Syndrome and have done extensive research on it. I have some pretty good links on my blog including a video of Dr. Jonathan Schmahmann describing the details of CCAS.

countdown2brainsurgery.blog...

I hope this helps.

[Hidden in reply to AlyfromNY]

Thankyou for your reply to my post. I have found the link you posted very interesting indead although i found some of the information hard to understand.

I am going to my GP on Monday and I am going to ask her to refer me back to my Neuropsychologist. I previously saw my Neuropsychologist on three occasions but never got any useful feedback that would help me understand whats going on in my head. Maybe she was reluctant to give me too much feedback because I told her I fear a psychological label. However I would prefer the truth to be told rather than being left on limbo! It would help me tackle the problem better through understanding what exactly is going on in my head. The only useful info she gave me was that she said I am a very possitive minded person. Does this mean there is nothing wrong? I am so confused!

People seem to fall out with me over the very good empathy issues I have with others. For example I have a neighbour who has been known to be very violent both emotionally and physically but I appear to be the only one in the street who sees him as a decent individual deep down. He is very friendly with me but my wife and neighbours are scared of him! This puts a lot of pressure onto me because simply I will not ignore him like others do. Its not in my nature or personallity traits. Does any of this appear familiar to yourself AlyfromNY?

Sorry for the long post. Just happy to offload my frustrations. Thanks again. Iain

[AlyfromNY in reply to Hidden]

I do see this trait in myself. I am overly friendly (and according to my husband) too trusting. I think one of the side effects that CCAS has on me is that I am more childlike in many ways. I can be stubborn, react inappropriately (like stamping my foot), I resist doing what I know I should.

The symptoms of CCAS are varied and are really not so different from other brain injury symptoms. The main thing to remember is that although it affects behavior, it is NOT psychological. Just because it is not visible to others the way ataxia is, it is no less a real symptom of damage to the cerebellum.

This is a link to the Wikipedia page. I think it is a little clearer:

en.wikipedia.org/wiki/Cereb...

[Hidden in reply to AlyfromNY]

Thanks for your link. I had already looked at this link but couldn't quite understand it all (too complex for me). You mention one of the symptoms being childlike which I find interesting. For a number of years I worked with children from many different backgrounds and loved the work. I built up fantastic professional working relationships with all children and felt that my team workers were jealous of this. Maybe it was because I always wanted to be involved in whatever activities the kids were doing? I just don't know? I think I just loved re-living some good childhood moments that I seem to have missed when I myself was a child.

Being overly friendly and too trusting fits in with me as well. Having said this I find it extremely hard to trust others. For years I couldn't find a doctor to trust and when I eventually did she retired a year later! I'm now back to square one again trying to find a good doctor I can sincerely trust.

I did read somewhere that CCAS is not as some might say, 'Its all in your head'. But rather,'Its in your brain'. I'll go along with this.

Thanks again AlyfromNY. Iain

[ddmagee1 in reply to Hidden]

Tell me about it, Aly /Hidden! I, too, have a positive approach, and am able to express myself well. I am a trusting person, and have found myself, in positions where others have taken advantage, of my good nature, including deceiving me, purposely. It really hurts, emotionally, when, over and over, I explicitly trust someone, and then they turn around, and consider me easy prey, and deceive me! Even though I try to be wary, and not let that happen, it still occurs. My youngest brother tried to pull the wool over my eyes, several times, when he needed financial help, as an example. Recently, an auto dealership, charged me an extra $4400 in a car deal. I didn’t realize it, till after I signed the deal, and it was too late. A few years ago, on a house mortgage deal, I was saddled with 5 years extra house payments, than what I originally was told, it was going to be. Somehow, the paperwork was manipulated, or something, and I got screwed, big time. I didn’t realize, until after I signed papers, what had occurred. About 6 years ago, I had to have major dental work done. The Dentist, sent me to three other specialists, for pulling teeth, 4 root canals, and orthodontist, to put in bone implants, in addition to his charges. It ended up being $33,000. I had no insurance, and had to take out loans, which I’ve been paying off ever since. Now, my teeth need more work, and I’m reluctant to go to a dentist, for fear that they will find a way, to rip me off. So, sorry about all this complaining. I do feel that I am compromised, with having Cerebellar Cognitive Affective Syndrome.

[Louiselmf in reply to AlyfromNY]

Hi I am having a terrible time getting a dr. to believe my symptoms after my stroke are more serious that depression. i have nearly all signs of CCAS. can you please tell me the dr name that diagnose you so I can find one with those exact same qualities here.'

thank you

Louise

[neta]

I was diagnosed with cerebeller ataxia (auto immune induced). There are no cognitive issues at all, just motor. Walking,speech and writing (also typing) are affected. I appear normal (looking) at this stage. I hope it continues. I walk unaided and talk (only I hear the impediment). The whole thing is very, very annoying. Fell once in my apt rushing to get the phone.