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    Genetics testing

    Hi
    My mum has had MND since March ‘18 (well that’s when symptoms started) and has progressed quickly but she copes amazingly. I am with her every step of the way (no pun intended &#128580 so know her symptoms inside out. So with this I’m starting to get a very unhealthy dose of health anxiety myself. I’m starting to worry about getting MND too and I’m analysing every time a muscle twitches or I drop something or I am generally clumsy. I think as time goes on I’m going to drive myself insane so I was wondering if there were any tests that could indicate a predisposition? (Not the MND test - I am aware that it is unlikely that I am having any actual symptoms). Any advice or experiences greatly appreciated.

    #2
    Hi Helen, has your mum had a blood test to do a genetic test? If not then ask her to speak to her consultant to organise a genetic test. Only 10%, approximately of MND sufferers have a faulty gene and of those there's several faulty genes so each individual fault is rare. I wouldn't get yourself all wound up about it. Stress is a powerful actor. Best talk to your GP about how you are feeling. Take care, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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      #3
      Thank you lynne. On the one hand I feel silly for jumping to conclusions just because my thigh muscle is twitching but on the other I can’t stop getting ahead of myself and catastrophising when my minds wandering. Mum hasn’t had the genetics test and I was hoping to look into it without telling her. This awful disease has taken everything from her and the last thing I want to do is add to her worries by bringing up the question as to whether it could be genetic .....

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        #4
        Dear Helen82,
        It is very easy and perfectly understandable for you to think any pain or twitching you feel could be related to MND especially when you are with your mum on a regular basis and are very aware of the symptoms of MND.
        There is no test to determine predisposition, the only tests available are those as suggested by Lynne K, tests to see if there is a faulty gene responsible for the MND. Usually these tests are only performed when there is a history of 2 or more family members having a diagnosis of MND. You would only be offered testing if a faulty gene had been identified in the person diagnosed with MND.
        Try not to worry too much Helen, however if you feel overwhelmed do speak to your GP who may be able to help with any anxiety you are feeling or if you prefer you can always contact the helpline on 0808 802 6262 to speak to the team about your concerns.
        With kindest regards
        Jacqui Anderson
        Senior MND Connect Adviser

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          #5
          Thank you for your reply. I’m going to see my GP - the same one that’s managing mums care. I’ve just got lots of muscle twitching and changes of sensation in one leg and it’s driving me mad. I don’t even know if these are first symptoms or anything - I need to get a bit of perspective I think.

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            #6
            Good decision about the GP Helen. If you are up to it please drop in here to let us know how you got on, Lynne K
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
            I'm staying positive and taking each day as it comes.

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