MSA Trust

Not sure if I am now newly diagnosed ?

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Home Forums Newly diagnosed Not sure if I am now newly diagnosed ?

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #14721
    AvatarPeterBT
    Participant

    Hi,

    My name is Peter and I got official confirmation that I had MSA last Sept 2018. Was fairly clear cut really. I ticked all the boxes and Parkinson’s was not really ever suggested. I am still mobile although walking is hard work. I can peddle about although the low blood pressure coat-hanger pain makes bike riding hard work!I get tingly feet upon weight bearing and this goes away at night to be swapped for stiff ankles in the morning until i weight bear. Please is this normal MSA ?

    regards

    Peter

    #14727
    AvatarGwendoline
    Participant

    The answer to this question is always ‘there is no normal for MSA’. I was diagnosed with Parkinson’s in December 2016 then with MSA in December 2017. I had to stop cycling in summer 2017as my balance was so badly affected that l kept falling off. My pain is in my back and is due to my worsening posture, I can still walk but need to use a zimmer or stroller. I have great difficulty getting out of bed,and chairs and in and out of cars. In the last two months my condition has altered quite significantly. I no longer go out alone,have stopped driving, and need help dressing. I fall often but, I’m lucky in that so far I have ‘bounced’ (no bones broken).

    #14747
    AvatarPeterBT
    Participant

    Hi Gwendoline,

    thanks for the response and sorry to here about your lack of riding. I really enjoy my riding obsession and am struggling to come to terms with the future and probable lack of peddling. I fell off in December and broke my collar bone. only low speed and my fault, crossing a kerb from road to pavement. Not sure why but probably due to lack of awareness caused by my msa! so i didn’t bounce and with conservative treatment it might be six months until i am healed. my clavicle is in two bits!!

    Peter

    #15015
    AvatarDiane Ball
    Participant

    Hi Peter.
    A man who comes to our support group got a recumbent cycle to use when his balance was beginning to fail. He could get out and about and enjoy outings with his wife and still be independently mobile. Is that worth considering? As with all things MSA if you can plan ahead it is best, and do all you can whilst you can as you have no idea when things will change.
    Diane

    #15016
    AvatarDiane Ball
    Participant

    PS Gwendoline is right – there is no normal for MSA!!! It is a ‘pick and mix’ disease and no 2 people present the same. My husband has no pain at all despite being quite disabled now. Diane

    #122242
    AvatarPeterBT
    Participant

    Hi,
    I am still pedaling but electric bike now. Legs weak but can push the peddles around with help! I like the advice about recumbent bike (trike). No cheap alternative but definitely a safer idea to get around. A work colleague suggested a bit of crowd funding.

    So check the link and the amazing response!

    https://www.justgiving.com/crowdfunding/sharon-beeston-taylor

Viewing 6 posts - 1 through 6 (of 6 total)
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