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  • Louise
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    Post count: 4

    Hi Mandy

    You can read my story above. I have multi- focal Dystonia. I take LOTS of drugs, but am due to see my neuro shortly and am going to have a chat about cutting back the number of different drugs I take.

    Though I’ve been taking Madopar (levodopa/dopamine) for a while, I’ve only taken a tiny amount and am currently trialling a much larger dose. Fingers crossed!, but I think it may be working; working in a way that almost nothing else has.

    As well, I have Botox for a twisted left foot, and it works – sort of!

    I am currently trying to find a neuro Physio. A year or so ago, I saw a mainstream physio and ended up in a lot more pain.

    How amazing that you read that article about Dystonia. As a group, doctors seem to know amazingly little about Dystonia. If ever I mention it, they generally say – but that’s a symptom, not a condition.

    I hope you get many replies with lots of suggestions.

    Louise

    Louise
    Participant
    Post count: 4

    Hi Eric and Robyn

    By comparison, my neck turning and speech difficulties are very minor. And as for the rest Eric – yes, it is a long list, but to look at me you wouldn’t guess most of it (possibly because of medication). In fact, if I stayed in bed all day or sat in a recliner, I’d be in almost perfect good health! It is just doing anything that starts off the twisting and within hours – exhaustion.

    If you saw me in a restaurant you might notice that I tip a bit to the left and am not eating much, and my walking/moving is a little on the slow and laborious side.

    I’ve come to realise that one positive for me is that I am the Mother to a very active 9-year old, which means I need to make sure I get my resting/activity balance just right. There’s no feeling sorry for myself or pushing things until I collapse in a heap! When I get the balance right, I am able to do most of what I need to do.

    Robyn – thank you for telling your story. I am sure I am not alone in finding the journey to diagnosis quite a long, lonely and laborious one. It helps to read the stories of others. I applaud you ladies for what you are doing with this site. Let’s hope we hear from others soon.

    Cheers
    Louise

    Louise
    Participant
    Post count: 4

    Hi Eric

    My diagnosis took about 6 years as well (if I don’t count the 9-10 years prior when I experienced an easily tiring right arm.)

    I’m quite surprised at just how long it takes, as I understand dystonia is not rare.

    I am pleased the Botox has worked for you. What a relief! I have tried it just once – in muscles on the left hand side of my torso. It didn’t work so well for me, apparently because of the large size and number of muscles involved.

    I have some minor spasmodic dysphonia. My voice goes croaky after a while and the left hand side of my throat hurts (a lot!) when I sing or make speeches. Consequently I don’t do much of either these days.

    Do you have swallowing difficulties Eric?

    Louise

    Louise
    Participant
    Post count: 4

    Hi. I’m Louise. After more than five years of experiencing significant symptoms, I was diagnosed with multi focal dystonia recently.

    For me, it all started with a slightly weary right arm 15 years ago. As this didn’t present me with any practical difficulties, I ignored it. Come 2009, and I started having difficulties writing. From that point, and in rapid succession, I developed a painfully twisted left thigh, an inability to type, swallowing difficulties, a shaking face, weak arms, and – worst of all a ‘collapsing’ torso, as the twisting and turning of muscles on my left side leaves me unable to sit unsupported for more than a minute or two. For a number of years, my head has involuntarily occasionally moved itself to the left. It’s frequency is lately increasing and becoming a bit painful (unless I give it a spell by looking over my left shoulder for a while).

    While hellish at first, I soon realised how lucky I was to have been born in an age with automatic cars (I had driven a manual), voice-activated software, a Thermomix for the kitchen (I cut my hands a lot before its purchase), and the capacity to work anywhere that has come with the Internet.

    I’ve recently started work two days per week. I go in to the office, and work in a recliner and operate my phone and computer via a headset.

    I’ve lately been working hard at normalising my life as much as possible. This requires a LOT of rest. Packed in pillows in my recliner with my arms supported, my muscles soon stop their evil twisting. The less they twist, the less tired I get.

    I take Neurontin, Valium (at night), Norflex, Sifrol, Amantadine (for fatigue), and Movicol, Colese and Coloxyl (as I’m unable to digest much solid food.)

    Well, that’s me! I’m looking forward to others coming forward and telling their story.

    Cheers
    Louise

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