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Thread: Father diagnosed and genetics

  1. #21
    Forum Member Lynne K's Avatar
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    Thanks for the information Onein400. 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.

  2. #22
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    Quote Originally Posted by Lynne K View Post
    I hope that you don't mind me chipping in Tecwyn. Worry is normal for a short time. But best to sort it out quickly because it wastes time if anybody dwells upon some unknowable negative thing. Even if you had a 50% chance of getting MND (which I doubt very much) why waste energy and ruin years of future happy times by keeping it at the front of your mind. I think that you are like me and a lot of others in that you like facts, assurity. But gaining some composure and peace while dealing with this horrid disease requires a bit of letting go of what may or may not happen in the future. As you said to Ellie earlier 'what will be, will be.' Very philosophical and true. Ask your questions of your dad's neurologist soon if you can. Get genetic testing if it will help. But whatever you do, live a full and happy life. Don't let MND take that from you. Lynne x
    Thank you Lynne, some very wise words and thoughts there, hopefully my dad can learn to stop thinking of the future too much

  3. #23
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    Thanks onein400, some interesting information. I happen to agree with what you are saying as it makes sense but still I think some reserve needs to be in place when educating the public as any misinterpreted information could lead to a lot of anxiety and worry. Neurologists and specialists are still very much giving patients a sporadic or familial diagnosis and are also from what I am gathering reassuring families that there is no need to worry if it doesn't run in the family.

    Many best wishes

  4. #24
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    Onein400.. You seem very knowledgable in the genetic side of things, please would it be possible to elaborate on the following especially the part about it NOT being dominant/recessive inheritance

    Also just because there are no cases in a family (largely due to recall), that doesn’t mean a case is NOT genetic related. Families are quite small these days. It is also important to know that even if you have one of the currently identified gene mutations, it is not 50/50 thar you will get MND. MND is NOT a simple dominant/recessive gene inheritance disease.

    Best wishes

  5. #25
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    I have genetic sod1 MND and have always been told by neurologists that this is a dominant gene ie 50% chance of getting it. I come from a large family...which does distort the figures but I am the 5th sibling to have MND in my family. It is possible to carry the gene without getting the disease. I think my mother was the carrier...she died of a heart attack at 58yrs old. I just thought I would add to the debate. There are so many theories around ......Cheers Dani

  6. #26
    Forum Member Ellie's Avatar
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    Yes Dani, you're right - most of inherited genes which cause ALS are in an autosomal dominant pattern, and, to a much lesser extent, are in an autosomal recessive pattern.

    Ellie x.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #27
    Forum Member Lynne K's Avatar
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    Gosh Dan. That's the first I've heard of so many siblings to have MND. Not good at all. 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.

  8. #28
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    Lyne... I come from a family of 16 children that’s why it’s sounds a lot! Not 50% yet but not far off...Dani

  9. #29
    Forum Member Lynne K's Avatar
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    Oh I see. Thanks Dani. 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.

  10. #30
    Forum Member Onein400's Avatar
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    Even if you have an inherited gene mutation that is associated with MND that does not mean you develop the disease.
    For the disease to start we believe that a number of steps have to happen. It varies from gene mutation to mutation. Some sod1 mutations are highly penetrant, ie you are more likely to develop the disease. But it’s still not 100%. But other genes are like 20% even if you have the gene.

    Mind you, you might get hit by a car tomorrow or get cancer before!! It’s statistically more likely! If you ride a motorbike, the data shows you are more likely to die from that in your lifetime! Scary!

    I would have genetic counselling if you want to pursue further. There are implications.
    Last edited by Onein400; 17th October 2018 at 08:13.

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