Hi everyone

[londoner]

Hi. My dad died from MND at 33 after getting ill from about 31. That's not much older than I am now. I was always told it was because he was a boxer and feel hurt that this information was untrue. My aunt has early onset dementia. I'm not sure if it's FTD as I never thought to ask until I realised that there's a link between FTD and MND. I feel funny suddenly asking my cousins what type of dementia she has as I don't want to worry them, but think it may be FTD as that's most common in people who aren't elderly and she's in her 50s.

Since I found out about the possible genetic link I've gone from being occasionally worried about getting MND to thinking about it daily. I've noticed I've been twitching every day for about 6 months since I found out it's a symptom. Perhaps I just didn't pay attention before. I was seen by a neurologist a few months ago and my GP and they said I don't have clinical weakness. I recorded my visible twitching to show the neurologist who's seeing me again in 3 months as I didn't twitch during the appointment as she was making me move throughout it to do strength tests and I was wearing long sleeves and trousers. My GP sent me for a calcium blood test to see if that's the cause of twitching but I feel as if she's just trying to make me feel better. It happens every time I'm resting for more than a few minutes. I'm terrified and have no one to talk to about it as my mum doesn't want to deal with the thought, and I don't want to worry my dad's side by telling them they're at risk too. Sorry for the rant but I can't sleep and just needed to get that out!

[Mymothersdaughter]

londoner hello and welcome to you. I can only sympathise. My mother was diagnosed with MND in February this year. She is in the advanced stage, cannot speak, is tube fed and bed bound. Thankfully her cognitive function remains. My grandmother had dementia and I am petrified that there’s a link and I’ll end up getting it (MND and/or dementia). Have you looked in to genetic counselling? It may or may not be helpful to know what your chances are of having the same. I’ve asked to go through the process although part of me wonders how helpful it will be, in case something is uncovered and I end up knowing I’m a ticking time bomb. My thoughts are with you. The worry is dreadful (and the reason I am awake at this time) xx

[denise]

My husband has mnd and ftd. I am sure the ftd has been around for at least 10 years the mnd 5 years or more.

We did go ahead with gene testing and was told it wasn't genetic but he has had further blood tests in January this year and again last week. This is again to show if its genetic because the first test result was only for one specific thing. These further tests will again show if it is/isnt genetic but also will be shared world wide and might show some anomalies that might be of interest.

So we wait. It is stressful but we talked about it and felt we would rather know because then we can work with it or be happy knowing that its negative.

Dementia can come on at any age. So it's not necessarily ftd.

I know we can all worry thinking we have this or that and anxiety and stress can make things worse. We have no idea what is waiting for us and with covid around who knows. We can worry ourselves silly when we should just try and enjoy life because what will be will be.

I'm sorry you are going through this. It really isnt easy.

Denise

[JamesW]

Hi,

Sorry to hear about the situation that you find yourself in. Please take some comfort that benign fasciculations (twitching) are very common and often stress related (ironically excessive worrying can make the twitching worse). As a standalone symptom fasciculations are highly unlikely to be MND.

A neurologist and your GP telling you that you have no clinical weakness also suggests MND is unlikely.

MND is a very rare disease and a familial link only contributes to 10% of all cases.

I wish you well, James

[PeterPan]

londoner Given that familial MND is so rare, as James says, it would be incredibly unlucky for your father, aunt and yourself to each develop it. In your aunt’s case, early onset Alzheimer’s (unrelated to MND) is not uncommon unfortunately.

If a qualified and experienced neurologist isn’t too worried right now, please don’t spoil your life worrying about something that may never happen. There are other explanations for fasciculations and maybe an abnormal calcium blood result is one. In my experience health professionals don’t organise blood tests just to make people feel better! Best wishes

[londoner]

londoner hello and welcome to you. I can only sympathise. My mother was diagnosed with MND in February this year. She is in the advanced stage, cannot speak, is tube fed and bed bound. Thankfully her cognitive function remains. My grandmother had dementia and I am petrified that there’s a link and I’ll end up getting it (MND and/or dementia). Have you looked in to genetic counselling? It may or may not be helpful to know what your chances are of having the same. I’ve asked to go through the process although part of me wonders how helpful it will be, in case something is uncovered and I end up knowing I’m a ticking time bomb. My thoughts are with you. The worry is dreadful (and the reason I am awake at this time) xx

Hi. Yes, the Dr is going to discuss gene testing with me in my second appointment in 3 months. She did say it was a blood test and that the bloods could be stored in case I wasn't ready for the results. She asked me to really think about how I'll cope if I don't get the result I'm hoping for. Sorry you're dealing with the same worries. x

[londoner]

My husband has mnd and ftd. I am sure the ftd has been around for at least 10 years the mnd 5 years or more.

We did go ahead with gene testing and was told it wasn't genetic but he has had further blood tests in January this year and again last week. This is again to show if its genetic because the first test result was only for one specific thing. These further tests will again show if it is/isnt genetic but also will be shared world wide and might show some anomalies that might be of interest.

So we wait. It is stressful but we talked about it and felt we would rather know because then we can work with it or be happy knowing that its negative.

Dementia can come on at any age. So it's not necessarily ftd.

I know we can all worry thinking we have this or that and anxiety and stress can make things worse. We have no idea what is waiting for us and with covid around who knows. We can worry ourselves silly when we should just try and enjoy life because what will be will be.

I'm sorry you are going through this. It really isnt easy.

Denise

Hi Denise. Thanks for replying to me during your difficult time. I know that worrying just ruins the present but my brain can't seem to take that in!

[londoner]

Hi,

Sorry to hear about the situation that you find yourself in. Please take some comfort that benign fasciculations (twitching) are very common and often stress related (ironically excessive worrying can make the twitching worse). As a standalone symptom fasciculations are highly unlikely to be MND.

A neurologist and your GP telling you that you have no clinical weakness also suggests MND is unlikely.

MND is a very rare disease and a familial link only contributes to 10% of all cases.

I wish you well, James

Hi James. Thanks for replying. I don't think I would've gone to the GP for twitches if it wasn't for my dad's MND. This makes me wonder if people don't usually pay attention to it or visit the GP until they also have muscle wasting because they have no family history. I wonder if I'm part of the 10% and I've noticed symptoms earlier than I would have if I wasn't aware of the possible cause. I am extremely stressed though but used to have occasional stressed eye and lip twitches whereas these are different as they happen multiple times a day and they over my body. I know there's no point speculating! I appreciate your reply

[londoner]

londoner Given that familial MND is so rare, as James says, it would be incredibly unlucky for your father, aunt and yourself to each develop it. In your aunt’s case, early onset Alzheimer’s (unrelated to MND) is not uncommon unfortunately.

If a qualified and experienced neurologist isn’t too worried right now, please don’t spoil your life worrying about something that may never happen. There are other explanations for fasciculations and maybe an abnormal calcium blood result is one. In my experience health professionals don’t organise blood tests just to make people feel better! Best wishes

Thanks for responding. I'm almost willing myself to have other illnesses so I don't have to deal with the thought of having MND. Sounds an insensitive thing to say on an MND site, sorry. It seems to be one of the few illnesses where being very fit and having a low BMI put you at higher risk, so I have no motivation to lead a healthier lifestyle. My dad was very active. I don't have a great support network so the idea of being dependant on people is probably want terrifies me the most. I admire you all as you seem to be dealing with MND so well. I don't think I could.

[Ellie]

[... twitches ...] This makes me wonder if people don't usually pay attention to it or visit the GP until they also have muscle wasting because they have no family history.

I'm unclear as to what you're saying here londoner - people who have ALS/MND usually present to their GP/HCP because they cannot do something, such as do up buttons, speak without slurring or stop a foot from slapping the floor as they walk. Atrophy (muscle wasting) takes a while to develop in ALS/MND.

Thousands and thousands of people in London twitch for no reason and that twitching will never cause atrophy.

I'm sorry about your father and wish you well in your genetic testing.

[londoner]

I'm unclear as to what you're saying here londoner - people who have ALS/MND usually present to their GP/HCP because they cannot do something, such as do up buttons, speak without slurring or stop a foot from slapping the floor as they walk. Atrophy (muscle wasting) takes a while to develop in ALS/MND.

Thousands and thousands of people in London twitch for no reason and that twitching will never cause atrophy.

I'm sorry about your father and wish you well in your genetic testing.

Both the GP and neurologist gave physical tests for clinical weakness, which I assumed would be due to muscle wasting. I thought that was the early sign they were expecting to find alongside my twitching but it does makes sense that wasting comes after a period of weakness, now you've explained it. As I was only 6 when my dad died, and even younger when he had his first symptoms, I don't know what his first symptoms were as my family never want to talk about his illness. Thanks for your reply.

[Drumond30]

londoner I am in exactly the same position as you. My Dad developed MND out of the blue last year, no family history, or so we thought, until we realised FTD is related and this is what my Aunt has.

My Dad has been tested and we are waiting for the results. I am also very worried about what this might mean for my family. I have 2 very young children.

If its any concelation, I have also started to twitch, not constant but all over. I've never twitched in my life. Until I see something else I am putting it down to stress. Dad is going downhill fast and we are all helping with his care. This, supporting my Mum, a full time demanding job and 2 young children is an awful lot to juggle.

[londoner]

londoner I am in exactly the same position as you. My Dad developed MND out of the blue last year, no family history, or so we thought, until we realised FTD is related and this is what my Aunt has.

My Dad has been tested and we are waiting for the results. I am also very worried about what this might mean for my family. I have 2 very young children.

If its any concelation, I have also started to twitch, not constant but all over. I've never twitched in my life. Until I see something else I am putting it down to stress. Dad is going downhill fast and we are all helping with his care. This, supporting my Mum, a full time demanding job and 2 young children is an awful lot to juggle.

Sorry to hear how stressful things are for you at the moment. I also have additional stresses and I hope that it's the cause of both our twitching. It's amazing what the mind can do. I don't have children but would like to. I feel I may miss the chance to have them if I don't get tested as I wouldn't want to risk leaving young kids behind or passing on a faulty gene. I really hope you get a reassuring result.

[londoner]

My GP sent me for vitamin blood tests, and the results were normal. I'd usually be pleased about this but now I'm upset as my GP seems to have no idea why I'd have twitching for 6 months if I'm not deficient in anything. She wouldn't test for magnesium as she said said they don't often do magnesium tests in primary care and I wonder if I'm clutching at straws pushing for one anyway. Another possible cause is hormonal, but again, possibly not a likely one. It's my dad's anniversary soon and I can't stop thinking about my health as the twitches happen whenever I'm at rest. I've managed to get a small amount of diazepam which is the only thing that stops or greatly reduces the twitching for a few hours. Twitching is the first symptom in a minority of people, and I can't stop worrying as I'm unfortunately a natural worrier and my GP can't offer any reassurance.