Ataxia and stress

Hi, going through relationship difficulties at the moment, and just wonder whether sometimes whether ataxia can be brought on by stress, or made worse by stress. The difficulties started before my ataxia was diagnosed, and I have got a diagnosis of Late Onset Idiopathic Cerebellar Ataxia, after an MRI and genetic testing was clear. Just wondered if anyone else has experienced this at all, or has any information on it, thanks.

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  • Hi Jill😊 I'd had severe stress before the onset of symptoms, It took years to get a proper diagnosis because my symptoms were put down to depression. I would agree that my relationship was rocky because of this, my husband was short of patience because my GP couldn't find anything wrong.

    Eventually after falls, an MRI showed Cerebellar Atrophy. This sounds odd but it felt like a weight lifted because I was believed, it wasn't ' all in my head'.

    Most people would agree that stress definitely makes symptoms more challenging to manage. It's not easy keeping a delicate balance 😉

    There are several causes for Cerebellar Ataxia apart from it being genetic, there doesn't need to be atrophy. It's not uncommon for a diagnosis to be Idiopathic or late onset.

    It's always a good idea to read facts on reliable sites that are easy to understand, googling often shows links that are too full of medical terminology, it's all too easy to misinterpret and 'make something fit' .

    Have a look at ataxia.org.uk and ataxia.org

    🙂xBeryl

  • No-one in my family has Ataxia but eleven years ago, when my symptoms first started and I was diagnosed with Late Onset Idiopatic Ataxia, I had just gotten out of a life of extreme stress. Gene tests were clear and nothing showed on an MRI but within a year of this diagnosis I had a wheelchair and two crutches for very short distances of walking.

    I think that my stress had something to do with starting it.

    (my diagnosis was fast because I had private medical insurance at that time. Not anymore.)

  • Hi, hope you feel less stressed today, I do think when you are stressed, it makes your ataxia worse, I find when I am anxious my legs stiffen up, I still cannot accept this condition, have you tried to smile before you speak? Grit your teeth!!! My marriage of many years is being put to the test, feel tired and angry.

  • My stress is that my marriage of 29 years has come to an end, and has been causing me stress for the last two and a half years, when I look back. The symptoms of my ataxia started within this time, with a firm diagnosis earlier this year. I am obviously under extreme stress at the minute, and obviously wonder if there is an auto-immune factor to my ataxia? At the moment, I would say it is getting worse, but I am wondering if the symptoms will alleviate once I begin to come out of this traumatic period.

  • Hi, stress definitely exacerbates ataxia, I do meditation and yoga which really helps.

  • I don't actively meditate but have no problem just zoning out😉 I like to think it's a form of mindfulness 😉 A few years ago I joined a friend at a Pilates class. I held the class up trying to get on my feet and orientated after floor positions 😤 It put me off going 😑

    Now, I know it's likely exercise could be tailored to my specific caperbilities🙂 One to one might be better 🙂

    For several years I managed to keep reasonably active just gardening, and it was something I enjoyed🙂 Eventually bending/reaching up made me too unstable and this activity is severely curtailed 🙄 But when the urge takes me I like to get out with the secateurs 😉 The trouble is, I like to snip but then have difficulty carting the stuff to the compost. But, it's all exercise 😉

    Right now I'm trying to get a head start on tea 🙄 My husband usually manages to get home from work just when my energy, and patience, are at their lowest. So, I'm pre cooking veggies, and then there's just chicken to pop in the oven😉 No potatoes, we're trying to lose weight 😉

    😊xB

  • Dear Jillj, I asked my neurologist if stress could cause ataxia. He said "no", but I still wonder. My first husband died of a terminal illness when I was 42 years old (our children were 12 and 14 years). I started having very minor symptoms of ataxia when I was 43 and was diagnosed with Sporadic Cerebellar Ataxia (atrophy of my cerebellum, unknown cause, progressive, symptoms 24/7) at 49. I think stress makes my ataxia worse, as I have more stiffness, etc. I'm 62 years young now...,ha! My best to you..., ;o)

  • Any kind of stress always makes my SCA worse. I try to be laid back a lot but some situations are very stressful.

    Take it easy

    Berejena

  • Hi Jillj,

    I have a similar idiopathic SCA diagnosis. Late onset. And I have definitely noticed that stressful times, or simply overdoing it physically, can make my ataxia symptoms worse.

    It sounds too easy to say "simply avoid stressful situations". This is especially not easy when an idiopathic diagnosis is made. It feels like a partial diagnosis (ie. there is ataxia, but we just don't know why").

    I particularly recognise what B says. It does get to the stage where you start questioning yourself ("is it just in my head?"). And just this in itself causes more stress.

    My answer was to tell myself that "this is just the way things are from now on" and "So what?" - and to surround myself with people who can accept what I have accepted.

    And to keep smiling :)

    Good luck,

    Iain

  • Stress definitely can make ataxia symptoms worse, it is recognised. Sometimes we can't control it, but just recognising it and thinking,' what can I do to help relax me?' can help. It does for me! Good luck.

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