Widespread twitching at rest which has spread over 6 months

[londoner]

Hi, my dad died of MND in his early 30s, which isn't much older than I am now. I've spoken to 3 Drs at the GPs and they can't explain the widespread visible twitches I've been having for about 6 months as they've done the blood tests that have ruled out deficiencies.

I hoped that it might be stress related as I've had anxiety disorders since childhood, which the GPs are aware of, but they didn't reassure me that that could be a possible cause, their only answer is ruling in/out neurological disorders. They have no other ideas.

I had my first neurology appointment a few months ago and my next one is in August to discuss genetic testing.They said I don't have clinical weakness but I fear I've picked up on the twitching earlier than most because of my awareness due to family history.

I don't have a support network or anyone I trust to help me when I can't help myself. Can someone be honest and admit that they think I probably do have very early MND? I don't think it's wise to wait until it's certain to admit it to myself as I know it's a lengthy process and I need to plan things whilst I still can as my family won't be up to it. Thanks.

[JamesW]

Hi,

Sorry to hear about your dad and also that you are concerned about having MND yourself.

The only people that really can confirm (or not) that you have MND are neurologists. However what I would say is that twitching is more often than not benign fasciculations which can often be caused as a result of stress and anxiety. Ironically the worry of potentially having something like MND will in all likelihood be making twitching symptoms worse.

In addition you would expect to see other symptoms accompanying twitching, this symptom alone would not really indicate having MND.

Can I ask if there is a family history of MND besides your dad?

Take care,
James

[PeterPan]

londoner I’m a bit confused. Didn’t you start a similar post about a week ago? I remember that you had quite a number of responses.
No one other than a neurologist can answer your question and no doctor would lie, deceive or keep information from you.
You say you don’t have any weakness? That’s not my experience of MND and my fasciculations followed my muscle weakness.
I really would suggest you get some help for your anxiety. Please don’t ruin your life now in fear of MND. On your last post people did tell you that MND is very rare, and inherited MND extremely rare.

[londoner]

londoner I’m a bit confused. Didn’t you start a similar post about a week ago? I remember that you had quite a number of responses.
No one other than a neurologist can answer your question and no doctor would lie, deceive or keep information from you.
You say you don’t have any weakness? That’s not my experience of MND and my fasciculations followed my muscle weakness.
I really would suggest you get some help for your anxiety. Please don’t ruin your life now in fear of MND. On your last post people did tell you that MND is very rare, and inherited MND extremely rare.

I did but at the time I had the idea of potential other causes to comfort me. I didn't claim that they'd lied, quite the opposite. I wish she had lied and suggested it was anxiety but she also thinks that the fasciculations may suggest a neurological cause now that the blood tests have come back and that even without my family history she admitted she would have referred me to a neurologist had I not already been referred by a previous GP. I have two much more minor conditions that are rare in people my age, but it didn't stop me from getting them. I'm not sure what leads you to believe that anxiety is a cause as none of the GPs have suggested that. If my posts annoy you then I apologise. Please don't feel obliged to respond. Perhaps I'm not entitled to post on here but I can't afford regular support for my anxiety, NHS waiting lists are extremely long and I don't know where else I could share these kinds of concerns. I thought ask mnd connect was the best place to share MND related questions as I thought it would reach a different audience, but I can see how it would bore people.

[londoner]

Hi,

Sorry to hear about your dad and also that you are concerned about having MND yourself.

The only people that really can confirm (or not) that you have MND are neurologists. However what I would say is that twitching is more often than not benign fasciculations which can often be caused as a result of stress and anxiety. Ironically the worry of potentially having something like MND will in all likelihood be making twitching symptoms worse.

In addition you would expect to see other symptoms accompanying twitching, this symptom alone would not really indicate having MND.

Can I ask if there is a family history of MND besides your dad?

Take care,
James

Hi James,

I didn't think so until I found out about my dad's sister's dementia and the potential FTD link, but my dad's side is very unconventional and there are lots of relatives missing from my family tree. Peter has made me aware that perhaps I'm clogging up the boards and so maybe I shouldn't make a third post unless I have a diagnosis or I decide to have a gene test and they find a fault. You replied to my previous post and I appreciated it then and I appreciate it now. I'll keep my worries to myself as, just as in person, no one wants to hear it! All the best and thanks for your kindness through your challenges.

[PeterPan]

londoner don’t worry, you are fully entitled to post here and to seek support from MND Connect. It’s just that no one here is qualified to admit you probably have early onset MND (as you ask). I only mentioned possible anxiety because you said you’d had anxiety disorders since childhood. That’s very tough. I do hope you get the answers and reassurance you need very soon.

[shelly21]

londoner hi. I think you are concerned as you have experience re your father.

My twitches did not start until a year after other symptoms. First slurred speech. Then weakness in dominant hand and then spasms in the same arm. My first physical sign of muscle wastage was my hand between thumb and finger and base of the thumb.

It really starts differently in everyone.

I think you know that we cannot and won't make any comment on whether you have mnd or not.

A lot of people come onto the forum asking similar questions and how can we answer it?

At your neuro exam they do some physical tests like reflexes etc.

I hope you can manage your anxiety pre August.

[londoner]

londoner don’t worry, you are fully entitled to post here and to seek support from MND Connect. It’s just that no one here is qualified to admit you probably have early onset MND (as you ask). I only mentioned possible anxiety because you said you’d had anxiety disorders since childhood. That’s very tough. I do hope you get the answers and reassurance you need very soon.

Thanks. I can tell you're a good person and you mean well. I know I'll just have to wait and see how things go and learn to stop asking silly questions that no-one can answer!

[londoner]

londoner hi. I think you are concerned as you have experience re your father.

My twitches did not start until a year after other symptoms. First slurred speech. Then weakness in dominant hand and then spasms in the same arm. My first physical sign of muscle wastage was my hand between thumb and finger and base of the thumb.

It really starts differently in everyone.

I think you know that we cannot and won't make any comment on whether you have mnd or not.

A lot of people come onto the forum asking similar questions and how can we answer it?

At your neuro exam they do some physical tests like reflexes etc.

I hope you can manage your anxiety pre August.

I imagine it's really scary being told you may have MND when you've never considered it before, but it's also really scary when you know what to expect. My mum could barely look at me when I told her that they'd ruled out common causes and are taking my twitches seriously. My GP asked me to take more videos to document any changes over the next few months until my appointment so she's taking the fasciculations seriously so they're not something I can try and ignore. I hope you're doing as well as you can and thanks for taking the time to reply.

[shelly21]

Then surely an emg needs doing ASAP. I had my emg prior to neuro appointment. Then everything is done ready for neuro.

Please ask your gp to refer you for the emg.

[MNDConnect]

Hi Londoner

The only healthcare professional that can confirm a diagnosis of Motor Neuron Disease (MND) is a neurologist. As you have mentioned that you have anxiety disorders since childhood and stress can bring on various symptoms so, please try find a way of staying calm as possible.

Please contact the MND Connect Helpline on 0808 802 6262 Monday to Friday 9am to 5pm & 7pm to 10.30pm for more support.