Genetic MND

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My mother, grandmother and two uncles have passed away from MND. I don't know if they ever had any genetic testing done but I'm assuming it's a genetic form of MND. I'm plagued by my 50% chance of getting MND and whether I should ever have children as I don't even know what gene to test for. It keeps me awake at night worrying if I will eventually get MND and I hate living my life in fear or a disease I can't 100% test for.

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  • Posted

    Hello Tina, sorry to hear about your family history of MND that's very unfortunate. What you need to do is get a referral to a neuromuscular specialist not a neurologist but a neuromuscular specialist. They can do blood tests to see if you carry the gene that your mother and grandmother carried. Also look up this site ALS forums you will get a lot of great useful information there along with very informative people that know als very well. I hope you find answers soon.

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  • Posted

    Tina,

     I can only imagine how scary this must be. I am so sorry for your loss. While im curious to hear more I have found that treating symptoms that are not already there can help prevent as well. Not in all cases. Good news is that Testing can be done. I myslef have had a few of them done recently. There is a list of the tests recommended in the order in which to receive them at mndassociation.org. It is a good place to start. I tried to avoid the EMG as per the description it is not a fun test. I won't lie to you, it is uncomfortable to say the least. IF you are not symptomatic at the time of testing. I really feel how this is affecting your sleep. Might I ask how old you are? Although at any age after having lost family members to this disease it would be frightening. Are you showing symptoms now? If not it is GREAT that you are starting to be proactive NOW! You are going to be alright.  Remember the glass is half full. Luckily there is room in the other half of the glass to fill it up with what you want! I am truly sorry for your loss. 

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  • Posted

    Hi Tina my grandma and my mum had nerve problems my mum was diagnosed with T am 4 years before she died I've now got muscles twitching etc and muscle atrophy my local hospital in hull is referring me to London to see a professer to try figure me out

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  • Posted

    Hi Tina

    My grandma had nerve problems and my mum was diagnosed with TM 4 years before she died 2 yrs again. Me I've got muscles twitching mostly in right leg but now is all over my body hull general has ruled out some nasties aka etc but they can't figure me out they're referring me to see Mary rilet in London she's a Niro professor I mentioned to hull ref to my possible genetic problems but they didn't seem to listen I bet it turns out I've got genetic issues. I'll keep you posted xx

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