After 11 weeks of body wide twitching I saw a Neurologist

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AnxiousWorrier7

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I posted a while back and just wanted to update and ask you very knowledgable people what you think.

33 female.
After twitching mainly in calf’s and thighs, and sporadically in arms, hands at base of thumb and in line with pinky finger, buttocks, abdomen, back, and sides, neck, for 11 weeks I decided to see a neurologist privately yesterday.

I have severe health anxiety, for which I have made the first steps to getting help with and have started some sessions with a therapist.

My neurologist was amazing. Did a clinical which he said was perfectly normal, and I had ‘good reflexes’ no idea what that meant. He said by that point of the examination he would of if he was going to have diagnosed someone with MND already, just by the way they walked in his office, shook his hand and then had a clinical exam looking for any weakness or atrophy etc.

I told him about my crippling health anxiety and he was so supportive, he gave me links to get some therapy and advised me to stop worrying and live my life. He said ‘life is precious and we only get one shot’ don’t waste it by worrying about something that’s not there.
He said it was most likely BFS and because I’m anxious I’m super aware and it’s making it worse but worrying and thinking about it constantly.

I asked him why Google states the worst case scenario at the top when searching for twitching and his answer was ‘If it wasn’t for Google I would be in a job, I used to get referrals by Gp’s but now I get referrals from Google’ 😂 Needless to say he advised Don’t Google!

He said for someone with health anxiety seeing him is enough, and for others it’s just not enough and they need an EMG for that peace of mind so they ‘know’, he’s said from his professional opinion he doesn’t think I need one but understands if I want want and he can arrange to get one done in the next few weeks.

My rational mind says ‘He’s said he’s not worried and that should be enough to put this behind me and move on’

But my anxiety says ‘But you won’t know for sure unless you have the EMG…’

What do you think in your knowledge of experience I should do?
Have the EMG for peace of mind or take this clinical exam as peace of mind and move on?

I have just read so many posts of people getting an EMG I feel like I should do as it’s the done thing to rule anything out.

I appreciate your time and advice :)
 

Nikki J

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There are a lot of emgs done for reassurance. I think when the neurologist is as definite as yours was they are a waste of time. I also find the reassurance rarely works. People start thinking it was “too soon” “done in the wrong muscles” or otherwise done incorrectly. you would be much better served getting help for your admitted health anxiety. As your neurologist said you get one life. Don’t ruin it with worrying about diseases you don’t have
 

ReginaS

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Anxiety wants to have an object it can attach itself to. Most of the time it won't calm down after one thing is eliminated but it will look for the next thing and it all feels so real as nothing comes with a label "this is 'only' anxiety".
It's a much more beneficial process to work on/with the anxiety, learn to see anxiety as what it is and find out what helps to calm it. Another medical test won't really do the job.
A family member has been plagued with anxiety and over the years has learned to see it as such and work with it. It's definitely not always easy but the skills they developed are impressive.
 

AnxiousWorrier7

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Thanks for the replies.
Can anyone shed some light on whether an EMG would rule out als, and if it picked up some sort of nerve compression or damage due to something else that’s not als would they be able to distinguish between the two?
I’ve read someone on a group for twitching say that there are false positive risks for an EMG, my whole reason for having one would be to put my mind at ease but I don’t know if I would be able to relax if it came back abnormal and they couldn’t tell you why. I would be thinking the worst.
Any one know if they can tell that if it’s abnormal its still not als?
Thanks
 

Nikki J

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Emgs can be abnormal in multiple ways but the ALS pattern has a specific pattern with multiple elements it is true there are a few otherule outs to be done if that pattern is seen sometimes. Most of the alleged false positives in twitching groups are, I think, in the person’s mind. We see here quite commonly that people will have one element on their emg that is also seen in ALS. They lack all the other elements and the pictures is either totally benign or points elsewhere but they declare their emg “ dirty” a non medical term and believe it shows impending als in spite of their doctor explaining it does not
 

Aaronmandevill

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Yea as scary as it is I would say start medication for anxiety or start cognitive behavioral therapy. There are many non addictive medications that work well for different types of anxiety. This would be a psychiatrist or psychologist so hopefully you don’t have a stigma about seeing them.

The odds of getting als are crazy low in the first place.

Bfs mainly happens in calves and sporadically other places.

I had health anxiety my whole life and saw lots of people for cognitive therapy. That coupled with some medication got it mostly under control.
 
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AnxiousWorrier7

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Been experiencing twitching for 3 months now And had a clean Nero exam a few weeks ago.
Due to go for an EMG on Tuesday for my own peace of mind even though Neuro didn’t see it necessary but said if it would ease my health anxiety then he would do one.
Over the last few days my thigh has been feeling ‘off’ like tired and fatigued. And today I’ve got this pain that goes down the inside of the thigh from the groin and from my buttock down the back of my thigh.
It shoots when I go to stand up and put that leg forward first as if to push up.
I’ve got into my head due to my anxiety that it’s failing thigh muscles and that’s why I’m getting pain in surrounding muscles 😣
Does this sound like what would happen?
I have no visable atrophy that I can see.
 

Nikki J

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Please do not post again until reporting your emg results
 

Bestfriends14

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The mind is a powerful thing. Please report your clean EMG results after you've had it done. It helps those who needlessly worry about a disease they don't evidence having, see why they don't have it.
 

AnxiousWorrier7

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I wanted to pop by and give an update after having my EMG today.
I’m hoping the admins can link my previous posts here for context?

I want to help others who may find themselves here due to the overwhelming fear that they have ALS.

I have been twitching in my calf, thigh, arm, buttocks pretty much everywhere for just over 3 months now. They appeared a week after covid.

I have major health anxiety, for which this has actually made me finally realise I need some help with and I’m in the process of getting some therapy for and learning to coping strategies.

I decided to conduct doctor Google, and that was the worst thing I ever did because we all know what came up, the first thing that popped up was ALS/MND. This was a condition I had heard of but not knew much about until I started the dive into the rabbit hole of researching, reading, obsessing over stories and eventually finding myself on forums like these.
I couldn’t concentrate, I wasn’t sleeping or eating well, and my life was going by as I was spending all of my free time googling and obsessing over something my family and me deep down knew I didn’t have.
Once I started I felt like I couldn’t get out of this hole of worry, anxiety, fear and a big vicious circle of what was probably making my twitching worse.
I had complete convinced myself I had this terrible disease I was worried sick about not being around for my young family.
I started to perceive weakness, convince myself my thigh was wasting away and that I couldn’t lift as heavy object as I was used to.

I decided to pay privately to see a neurologist a few weeks back and he gave me a clean clinical exam, strength tests were normal and reflexes good. He said he did not suspect ALS at all. He said he didn’t think an EMG was necessary but he said if I felt it was going to help to put this behind me and allow me to move forward and get help for my health anxiety then he would arrange one.

So today I paid privately again for the EMG (spending almost £500 for these tests for peace of mind)
He did the nerve conduction part, and then the EMG and turned to me and said ‘Everything is completely perfect, you do not have MND’

I feel an overwhelming sense of relief like I can’t explain, I feel like I have been given a chance at life that I’m fully aware many people do not get to live and i am so so grateful and thankful for that.

This has truly shown me that life is precious and it’s for living, I have spent the last 3 months worrying and making myself sick with anxiety when I should have been living my life.
I really hope that if anyone finds themselves here because they’ve googled twitching, you can come to realise that it is massively driven by anxiety which has been caused by googling and then cocking yourself you have all of the symptoms of this disease.

Please please, don’t be like me and waste your time and energy worrying, Go and enjoy your life as some people don’t get that chance and we should be forever grateful that we have a life to live.

My neurologist said to me ‘life is precious and we only get one shot’ don’t waste it by worrying about something that’s not there, Go and live your life and enjoy your family’
And I am going to do just that!

I want to thank everyone here for their help and I wish you all the best 🙌🏻
 

AnxiousWorrier7

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I just wanted to pop by and say in doing really well with my health anxiety therapy and we are working through lots of anxiety.

I feel so much happier after having my EMG, but if you have health anxiety your mind will try and wander, and I’m really trying to stop that from happening and nip it in the bud.

I would just like to ask one question from the very knowledgable people on here…

I had an EMG done in both calf’s, ankles, right thigh and right lower arm and right upper arm and all was normal.
Would this show up if you had Bulbar onset?
I can’t find any real answer to this question and I know that it’s my anxiety playing with me again, but I’m trying hard not to go there.

I forgot to ask my Neuro if the EMG on lower and upper limbs would be enough to rule out bulbar.

My twitching is in calf’s and thighs mostly (for 4 months now) and I’ve noticed it’s diminished since having the EMG and becoming more relaxed.

The last few days I’ve had dry mouth and therefore saying words with ‘S’ in seems funny sometimes.

I really appreciate your advice and time and won’t bother anyone here after asking this question.

Thank you 😊
 

lgelb

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Yes, it would. You are good to go and don't need this site. It's great that you are working on the anxiety that can otherwise overshadow your real life.
 

AnxiousWorrier7

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Thank you for this.
I was doing so well and felt so relieved after the EMG but then I choked on some water that ‘went down the wrong way’ the other day and my anxiety started to play tricks with me and the thoughts of Bulbar als onset crept in.
I’m really trying to not go down that anxiety hole again so am saying to myself that I’ve had 4 months of calf and thigh, arms and bum fasciculations so if the EMG was clean then the throat feeling is only perceived.

From everyone here’s experience Bulbar doesn’t start with fasciculations on the legs and arms first?


It’s ironic since the clean EMG the fascics have actually all but gone I don’t notice them as much now at all!
 

Bestfriends14

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I think it's best that you move on from this site. This is the third "just popping by for one last thing " that you've posted. Continually asking questions of folks who are actually living with this disease, to help you with your anxiety isn't healthy, nor is it respectful. Please work with a counselor for your anxiety. You would get much further in addressing your health than you are currently, chasing a disease you don't have.

Good luck to you. I honestly hope you find a healthier way to live, as you will never get these days back.
 

ShiftKicker

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I am closing this thread. AnxiousWorrier, it is time to seek proper help for your health anxiety. This forum can not be used to scratch that itch every time anxiety rears its head. We are not qualified, nor is this the purpose of this forum. Please do not post again.
 
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