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Please can someone talk me down from thinking I may have MND :’(

34 replies

ACCx · 25/09/2021 16:40

So this may seem ridiculous to some but I suffer massively with health anxiety! I have convinced myself in the past I have numerous cancers and I really get myself into a state about it. My current fear is MND. I have developed muscle twitches a few days ago. They happen all over in random places in my body. They last a few seconds at a time. My grandmas friend has that and maybe that is why my fear is so high. I did have hypnic jerks a few weeks ago that went away when I started relaxing and taking magnesium supplements. Surely the fact I’m taking magnesium should mean I shouldn’t be getting these twitches. I’m googling myself crazy trying to figure out if this is typically a sign of MND. I know I shouldn’t google but when I get myself in a state I can’t help it. It’s like OCD. I’m currently having CBT for my health anxiety but clearly I’m not cured yet. I thought I was doing okay until these twitches started. I just wish these twitches would stop as it’s seriously freaking me out. I’m 26 years old and it is taking over my life.. I spoke to my gp yesterday who said she thinks it’s anxiety causing it. I didn’t mention the possibility of MND though so she didn’t reassure me it doesn’t sound like that. I wish I’d have mentioned it to her. I suppose I’m looking for someone to talk me down and reassure me Until I can speak to my gp again.

OP posts:
toastfiend · 25/09/2021 16:56

Hi OP, I mean this in the nicest possible way, but no one will be able to talk you down - you're in the grip of your anxiety and any reassurance you do get will be temporary before the anxiety takes hold again. I say this as someone with health anxiety who has also been convinced that I have numerous cancers/MND in the past.

In my case the twitches were anxiety and stress related - I was extremely stressed and overworked, tired, dehydrated, not looking after myself basically, and my anxiety was really uncontrolled. I then became worried I had MND and the twitches got worse because my stress/anxiety levels got even higher, so it became a vicious circle. I left the stressful job for one I'm much happier in and the twitches have all but gone (bar ordinary muscle spasms that I'd never have been aware of before). Your GP has already suggested anxiety as the cause, though (which is most likely) and you're unable to believe them, a trained medical professional, so you won't believe me because I'm a random on the Internet with no medical knowledge (and that's fine, I get it).

Logically, you must know it's extremely unlike to be MND, but your anxiety is masking the logical part of your brain. I suspect you won't be happy until you have the full battery of tests to prove absolutely that you don't have it - but your GP doesn't believe that you do, so you're unlikely to get them. By all means speak to them again, but I suspect that even that won't really reassure you, having been there myself.

Are you able to speak to the professional you're doing CBT with to help you manage your response to this? I went through IAPT and did CBT after my health anxiety nearly ended my marriage. It's the best and most freeing thing I have ever done for myself. I feel like I'm finally living a whole life again, so do stick with it, or if CBT isn't working for you then look at other options.

Sorry if that seems harsh, but just to say that I've been exactly where you are and it is possible for things to improve. Wishing you all the best.

toastfiend · 25/09/2021 16:58

I also know how hard it is, but do try to step away from Google, it provides snippets of information which, without medical knowledge to provide context, are often inaccurate, at best, or inaccurate and extremely harmful to your mental health, at worst.

onelittlefrog · 25/09/2021 17:02

You have some very good advice in the previous post.

I would also say your twitches are highly, highly likely to be do with anxiety. Listen to your GP and keep going to any CBT/ counselling/ therapy appointments you are offered.

It might even be worth getting private counselling as well if you are able to afford it. CBT is standard NHS offer but you might want to try something like psychodynamic therapy to really explore the roots of this anxiety.

Egghead68 · 25/09/2021 17:02

Have you come across “Theory A and Theory B” in your CBT? If so, this is a good time to use it.

I’d also strongly suggest dropping the reassurance-seeking and googling symptoms etc and just busy yourself with other things.

Good luck.

ACCx · 25/09/2021 17:09

@toastfiend wow thank you so much. You pretty much summed up my situation. Logically I know it isnt likely to be MND but like you say there’s the anxiety telling me ‘well what is it then’ I’m really trying to calm myself But every time I get a twitch it feels like I’m back to square one. I don’t know if i should continue with the magnesium as they clearly aren’t working. I’m speaking with my therapist next week so will definitely bring this up as they are new symptoms that I’m struggling with. I’m so pleased you have been able to manage your anxiety. I can’t wait for that day. x

OP posts:
ACCx · 25/09/2021 17:09

@Egghead68 no I haven’t but I will look this up! I really need to do something to calm me down as I feel like I’m making myself worse.

OP posts:
inkhopper · 25/09/2021 17:12

Anxiety can cause twitches!! Don't stress.

ACCx · 25/09/2021 17:27

@inkhopper thank you! This is my first time having this as a symptom so I’m freaking out. I’m probably making it worse. X

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RockPaperScissorLizardSpock · 25/09/2021 17:46

OP, reading your first post is like reading a post about me. It’s tiring, isn’t it?
As PP have said, I highly suspect this is caused by stress and anxiety, as I get similar twitches during highly stressful times. Step away from Google for a diagnosis. I’ve learned to now think to myself ‘I’ll stop letting my symptoms bother my for x number of weeks, but if it’s still a problem after that time, I’ll consider if seeking medical advice is the next step to take’. 99.9% of the time the symptoms have gone! It’s almost like I’m giving my mind permission to not worry about it, but it knows that I haven’t forgotten about it altogether (if that makes sense!).
Big hugs (if you like hugs, of course!)

timesachangin · 25/09/2021 18:13

I have health anxiety. To put it in to context I didn't know what MND was so googled it to see if I might have it 🙄

It's such a horrible way to have to live. I think sometimes perhaps I'll live to be 100 and look back and regret all the years I worried unnecessarily, never really enjoying life.

Definitely step away from Google (easier said than done) and get your blood work done. I kept being told every symptom I went to the doctors with was due to anxiety and I just thought.... having anxiety doesn't mean I'll never have cancer. Anyway, once the bloods all came back fine I did feel relief and have f felt too bad now for a few months as it was reassuring

Northernsoullover · 25/09/2021 18:18

Google benign fasiculation (sp?). I posted here last year with the same panic. I still twitch from time to time! I even saw my GP who didn't seem concerned.

Whentheydontmeanwhattheysay · 25/09/2021 18:23

It’s so tough OP when you are a worrier, I’m stressing about the possibility of MS at the moment, google is a curse sometimes.

Low B12 & low vitamin D can cause muscle twitches, there are loads of things it could be other than MND. I hope the GP can reassure you Flowers

ACCx · 25/09/2021 18:24

@RockPaperScissorLizardSpock thank you so much. That is some good advice. Yes I like hugs 🤗
@timesachangin thank you. I’m one of those people that are scared to get tests ect. It would be so reassuring but it’s the wait time that would put me in a panic. I feel like if I go for tests, that means there’s definitely something wrong. It sounds so silly I know, but the relief would help!
@Northernsoullover thank you I will look that up!

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Robinred81 · 25/09/2021 18:25

I had loads of muscle twitches start out the blue when I was very anxious. I was certain i had MND or MS so insisted on seeing a neurologist (the waiting list took months though.) He told me there was nothing wrong with me other than high anxiety but he ran a few tests to put my mind at ease. There was nothing wrong with me. He said for a young woman to have MND it was something like less than a 5% chance and there would be visible signs of muscle wastage happening quickly along with severe weakness (not being able to stand on your tip toes or hold a mug etc)

ACCx · 25/09/2021 18:25

@Whentheydontmeanwhattheysay thank you so much. MS did cross my mind and I was worrying about that, but then I went even further and started panicking about absolute worst case. :( x

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Rantyrantason · 25/09/2021 18:26

I get random muscle twitches - generally eye lid and elbow but also other places - it’s always when I’m super tired and stressed. Happens lots of times a day for weeks or months and then gradually stops. I don’t suffer from health anxiety but do suffer from generalised anxiety (ah, but what if….catastrophise and ‘prepare’….aka live as if the worse was happening) and I know it’s horrible. I wish you well xxx

ACCx · 25/09/2021 18:28

@Robinred81 wow, thank you for that. Sorry to hear you went through the same. I bet the referral for tests was an anxious wait. I don’t know how I’d cope with that. Thank goodness I don’t have the weakness, although I convince myself I do, I can definitely stand on my tip toes ect. Did your twitches just stop on their own? x

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ACCx · 25/09/2021 18:29

@Rantyrantason I’m sorry you also suffer with anxiety. It’s reassuring that others do suffer with this and it is a symptom of stress/anxiety. Although mine seem to be all over my body in different places each time. So weird :(

OP posts:
Robinred81 · 25/09/2021 18:32

If it’s MS the neurologist said the twitches and pins and needles would 99% of the time always be in the exact same location and wouldn’t move to different parts of the body. It’s very rare to just have twitches as a symptom and not have the more common symptoms of occipital neuralgia and pronounced weakness on one side of the body x

ACCx · 25/09/2021 18:46

@Robinred81 ahh okay that’s reassuring. Is that the same for MND do you know? I tried to see if these symptoms I’m having are early signs of MND but the internet isn’t being very specific x

OP posts:
timesachangin · 25/09/2021 18:58

[quote ACCx]@RockPaperScissorLizardSpock thank you so much. That is some good advice. Yes I like hugs 🤗
@timesachangin thank you. I’m one of those people that are scared to get tests ect. It would be so reassuring but it’s the wait time that would put me in a panic. I feel like if I go for tests, that means there’s definitely something wrong. It sounds so silly I know, but the relief would help!
@Northernsoullover thank you I will look that up![/quote]
Yes I know what you mean. The wait was awful. I was so convinced it was something awful that it was worth it in the long run but I can understand xx

Robinred81 · 25/09/2021 19:01

Yes if it’s MND it will be in one area always on the same side such as the calf and the muscle wastage begins to happen quickly in that area and you can’t really use that limb easily anymore. For example the neurologist said a man came with painful cramps and twitching in his leg and he wasn’t able to do things like stand on his toes on that leg or do a squat and he had very bad weakness x

Robinred81 · 25/09/2021 19:03

Also I should add that my twitching was likely caused by my high anxiety but I’ve noticed it starts to flare up again when I’m dehydrated or being really sedentary. I’m also anemic and I’ve found since taking high strength iron tablets and b12 they have gotten better too. Chances are most people you know get them now and again too but because they aren’t experiencing health anxiety they don’t give them a second thought. I was in tears about the ones in my legs and my DP was like “oh I get those in my thighs and calves now and again and I can see my skin visibly jumping”. He’d never worried about it and just thought it was normal x

ACCx · 25/09/2021 19:17

@Robinred81Thank you. You have really helped me relax a little bit, I appreciate it so much. You’re absolutely right. Someone without HA wouldn’t even give it a second thought. With HA you’re aware of every little sensation aren’t you? I bet I’m making it worse by worrying about it to be honest. I wish my worry had an ‘off’ switch. X

OP posts:
ScandiCandy · 25/09/2021 20:57

Hi OP

I had muscle twitches in my early 20s and had convinced myself I had either MS or MND. Saw a neurologist and nothing was found, I was fine.

20 years later, in my 40s, I'm still fine.

I think mine may have been either stress/anxiety, dehydration, or nutrient deficiency... or possibly a combination.

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