If there’s anyone who has this please share your begging symptoms.
I was diagnosed 11 odd years ago as my mum had it so I got tested and it came back that I had it.
my arms and legs are getting weaker I feel I am losing muscle ? I work as a mental health carer so I’m very busy but I’m finding I am a lot more tired than usual and don’t have the energy like I used to. I feel like I forget a lot more and have trouble saying or finding wordings . Hanging washing out exhausts my arms and I get pains in my legs my body aches . I try to exercise when I have time and that. Find hard as the pain is crap so I give up , but I know I need to use my muscles . I don’t sleep well I suffer with headaches . I’m going through the menopause so I struggle to differentiate between the two . Please shed me some light on this. Thank you x 😊
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Kar71
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I was starting to experience Perimenopause..when ataxia symptoms appeared, I didn’t know whether I was ‘coming or going’. Brain fog, Vestibular issues and hormonal problems…not a good mix. Thankfully I reached Menopause when I was 55…it was a relief.
My GP was no help whatsoever…it took another 15yrs before it was acknowledged ‘something’ needed investigating…because I’d started having falls. But even after exhaustive testing I still have a diagnosis of Idiopathic Cerebellar Ataxia.
🤔It’s likely you have some idea of symptoms since your Mum was diagnosed…but there can still be variations person to person.
I have scr 6 inherited from my mum. The first symptom I had was an aching leg after a short and easy walk then I had balance problems shortly after double vision. Ended up seeing a neurologist who dealt with MS so went though a lot of scans and tests until MS was ruled out so was sent to London for more scans and tests.
My first symptoms was early in 2017 I was diagnosed in September 2019.
The condition is evil with no win I do what I can and try not it let it get me down so trying to keep the brain in a good place as brain in a good place body in a good place.
I admire you for looking after mentally ill people especially that your not good yourself I would try and keep working as long as you can.
Hope this helps if not please post again.
You are stronger than you think.
Take care my friend and never forget you are never alone 🙂.
To be honest I just do what I can when I can I help with research for Sca 6 at the RVI in Newcastle. I’m retired now but I think that has good and bad points as it’s great to have something to do and think about especially when it is helping people that need your expertise.
I need a walking frame to get around I get fatigue weak limbs, dizziness and balance problems and headaches it’s all part and parcel of been lucky to have Sca 6.
Some people inherit money, property, private jet but ME a brain problem 😵💫.
Try your best not to worry about the future deal with the here and now.
oh wow you help with research!! Thank you and well done you !
I think my daughter has it but will not be tested . So thank you for helping with research for the future of our lovely buddies . Fatigued weak limbs is exactly what I get thank you for wording it like that .
Depending what you read it does not say any of these symptoms only the dizziness
as I say I haven’t seen a neurologist apart from when I went to be diagnosed but is it actually worth going back as nothing can be done anyway ? I haven’t seen trouble with sleep but will not have sleeping tablets . I haven’t seen trouble numbness in parts of my legs but on the surface , it’s not causing me problems but I know things are changing . I haven’t seen trouble numbness in my arms and hands and tingling through the night it’s strange.
I was diagnosed 4 years ago. I couldn't walk proper muscle cramp,stiffness and joint pains. Though don't tell me the in hospital. I also have difficulties writing, walking,blur vision. I also sweat alotI inherited from my mother also has other siblings that has it
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