Family history of MND - worried with my 'symptoms'

[HarryL7]

Hi there,

I have a long family history of MND in my family and I'm 27-years-old.

My mum passed away from it, my grandad, his dad and so on.

I've always said I don't want to get tested because then if I found out I had the gene it would be like I lived my life with MND anyway, despite the chance I may never develop it.

But now I'm concerned because for about a week now I have felt what I can only describe as 'muscle twitches' around my body.

They come and go, are not painful, and only happen when I'm relaxed such as sitting at my office computer.


I have no other symptoms, but of course the first thing I did was google muscle twitches which immediately brings up results on MND.

I know you should never google symptoms but considering I've never had 'twitches' for this long before, I'm getting slightly worried.

I ride my bike a lot and atm use weights about once or twice a week. I used to go more but for months now I've only managed to go a small number of times.

I drink coffee, but this past week I tried two days without it but It didn't change anything, I was still experiencing the twitches.

I've read a few things on the web and this forum but the opinion seems to differ on twiches being an early symptom of MND.

As I said, I have no muscle waste or weakness.

I'm sorry to come on here and ask, as I realise there are people who on here who have already been diagnosed, and I feel somewhat insensitive.

But I honestly don't know where else to turn as I'm scared of going to the doctors (as I never wanted to know) and I don't want to worry my GF with it.

I really appreciate anyone who takes the time to reply, thank you.

[MNDConnect]

Hi Harry

I'm so sorry to hear that your mum and grandad passed away from motor neurone disease (MND).

With a family history of MND, it is understandable that you have concerns.

Whilst muscle twitches can be a symptom of MND, they are not considered to be a symptom of MND if they appear without any other symptoms. Twitching is rarely an initial symptom of MND and usually other symptoms have appeared before the twitching.

There are many things which can cause muscle twitches. The most common being anxiety, tiredness and stress.

I think it's worth you speaking to your GP about your concerns. It is understandable that you are scared to do this but it might actually be quite reassuring. They might be able to identify what could be causing the muscle twitching and put your mind at ease regarding MND.

Please do give us a call here at the helpline. It might be helpful to speak to one of us just to go over your concerns. We are available on 0808 802 6262. It's a free telephone number from both landline and mobile and it doesn't appear on any phonebill.

Best Wishes

Rachel
MND Connect Adviser

[Ellie]

Hi Harry,

I am so sorry about how MND has affected your family.

My advice is similar to Rachel’s above.

You are young to show signs of Familial MND, but I totally understand why you are so worried about your twitches. Usually I would say to a healthy 27yo that twitches are so common and normal that they, on their own, mean absolutely nothing. Your muscles work fine.

But given your family history, you’re going to be worried to the point of it consuming your life, so you need to see your GP, scary as it may be. Anxiety makes twitching worse, so you’ll find yourself in a vicious circle and doing what you specifically don’t want to do, which is “living with MND”. Go to your GP and don’t live in daily fear…

Love Ellie.

[HarryL7]

Well thankyou both very much for putting my mind more at ease and for the kind words.
I was going to wait until the end of this week (then it will be two weeks of twitching) before seeing my GP.

What are the usual first symptoms for MND? Is it possible that this could be the start and in a few weeks I will see other symptoms? Or do they usually come at the same time and quickly?

I remember my mum saying she lost control of her toe and noticed she couldn't reach the top shelf anymore.

[Ellie]

Harry, you need to relax mate - I mean that kindly - you'll drive yourself demented with this worry.

First signs of limb onset is not being able to do something, for example, button a shirt, stand on heels, i.e. muscle failure due to motor neurons dying.

Please see your GP. You are young - don't waste your time and energy stressing about twitching and MND. I know you fear your family history repeating itself, but honestly, you need to get it checked out for your sanity and for your GF's.

I wish you all the best.

Love Ellie.

[HarryL7]

Appreciate it Ellie.

Sending love back.

[MNDConnect]

Dear Harry,

Thank you for your reply.

How first symptoms appear is really very different for everyone.

First symptoms are usually a noticeable weakness in one particular area of the body, for instance the hands. If a weakness in the hands is a first symptom someone may find it difficult to grip and may find they do not have the strength to be able to turn a key in a lock or a bottle top.

You say that in your mum's experience her toes and feet were affected first, meaning she couldn't stand on her tip toe to reach the top shelf. This was because the muscles in her toes were not receiving nerve signals which instructed them to move. Without a nerve signal muscles become very weak and are unable to carry out any movement.

Twitching on its own is rarely attributed to Motor Neurone Disease (MND), and on their own they would not be considered a first symptom of MND. Twitching is usually a response to over stimulation of the muscles causing them to become fatigued, or it may be a response to stress or anxiety,

Please do go and speak to your GP and hopefully he will be able to reassure you that your fasciculations are nothing to worry about.

If you have any further questions, please do not hesitate to contact us.
With kind regards
Jacqui Anderson
Senior MND Connect Adviser