Hello to all, I’m new to this. I have a question for anyone who may have similar things going on as I’m bewildered about my diagnosis. I was diagnosed with cerebella ataxia in December 2021. I spent quite a few weeks in hospital having scans and eeg etc. loads of tests and neurologist then I was told I have a 4.5cm brain lesion in the CPA over the 8th cranial nerve. I’ve had SUNCT headache syndrome for a few years which I was having nerve block in my left eye and back of my head which are brutal on their own. I have tinnitus in left ear with deafness in same side. But now a smell of cigarette smoke when nobody around me smoke it’s quiet annoying. Just wondering if anyone has similar type symptoms. Currently I can’t walk my speech has got worse left arm and leg feeling like they don’t belong to me just so tired and confused. I’d appreciate any feedback
Lee
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Guardsman68
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Bless you I expect the challenges everyone with this awful condition face on a daily basis are just as bad as it gets. I feel like I’ve been thrown in a room with no visible door I know one is there I just need to find it and open it. take care and stay safe.
you have certainly been dealt an awful hand and I can only sympathise with all you have been through. You do seem to have more conditions than the known ataxias .. I wish you well in finding a way forward. I think its good to get some reaction from here. stay safe and dont forget to smile xx
Hello, thank you for your reply. It has definitely been a case of a diagnosed condition with a lack of information from neurological team I’m still a bit confused about the diagnosis as it was so quickly diagnosed. The brain lesion is a rough one still not sure what to think. I was just wondering if anybody else had a brain lesion with ataxia as I have a new neurologist I’m seeing in March and really need more information and answers.I’ll always keep smiling I’ll never surrender to this. Stay safe
We live in the UK. My husband is under the care of the UCL, London.
It might help if you could share your location. Some local patients could give you a bit more guidance as we find that unfortunately the type of support and care provision varies in different countries.
I’m so sorry you have to go through this! Cerebellar Ataxia is very difficult to live with. MRI showed a tangle of blood vessels attached to my brainstorm, pressing down on cranial nerve roots, thus causing me myriads of problems! My symptoms have been relatively mild, most of the time, compared to you. I guess I should consider myself lucky! I’ve taken 2 blood pressure drugs, for years, to keep my blood pressure low, thus the mild symptoms. My condition is inoperable, but I’m still hanging in there, 50 some years after diagnosis!!
Hello, thank you for reply. By the sound of it you have been going through this for so long and to be coping the best you can do. This is definitely going to be the biggest challenge of my life to date but I’m always up for a challenge though. I’m under no illusions though this is definitely tough I never thought for a moment I’d be in this position but at the moment I’m still trying to get my head around all the spiel the neurologist comes out with 🥴Stay strong friend and NO SURRENDER!!
I think ddmagee1 has it about right, we are stuck with this and the sooner we get past the anger, unfairness, loss of future expectations and downright grief, the sooner we can focus on those things we can do and set ourselves the challenge of reconfiguring our life and living space. SCA is generally not life threatening but certainly life limiting. I had so many plans for my retirement and am actually quite thankful that some will now require more effort and energy than they deserve. Even allowing for a reduction in plans, I still have more than I can achieve in this lifetime!This is sufficiently rare to stump most medics. Getting a diagnosis is fine but seldom comes with any ways to handle the effects.
Embrace disability aids, benefits and your chance to drive a mobility scooter!
Part of my therapy to keep my voice is to tell my wife a joke every day.
Find your own unique way through this and come here often for support and understanding.
Thanks nigelrheath! Having a good sense of humor, makes living with Cerebellar Ataxia, a little easier! Adjusting and coping with what we can do, rather than being despondent about our loss, due to Ataxia, is the best approach, in my opinion.
Hello Nigelrhealth, well I have just read your post and I must say I have only been on this site a couple of weeks I wasn’t sure about doing it but I’m so pleased I have because of what I read about Ataxia and how it effects people in different ways but also very similar ways. The struggle we all face every day is immense but you are definitely spot on a sense of humor and having the craic when ever we feel mischievous is important for staving of all the negative thoughts. When I read the things folks put on here it motivates me and inspires me to keep trying to be the best I can be. I have cerebella ataxia with quite a few other bits going on. Take care friend NO SURRENDER
Hello my friend how are you I hope you are doing ok. I’ve had some drama lately had a few nasty falls ended up in A&E 10 stitches in my head then on neuro ward for a week as started having some sort of seizures but all in all I’m not in bad order 🥴 just got to learn to drop and roll more effectively. I’ve got a new wheelchair coming this week so that will ease the long haired generals anxiety a bit. Thank you my friend for asking it’s really nice of you I appreciate it. NO SURRENDER
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