BFS vs ALS journey

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SRM_BBC

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I am a male in 30s and I have had muscle twitching, initially in my eyelids, since moved to diffuse twitching all over my body. This has been progressing for the last 12 months, with body wide twitching for at least six months. I have read the sticky notes in detail - thank you for the information on this. I am aware that muscle twitching alone is not a sign of ALS.

In terms of muscle weakness, there has been no obvious sign. I am very active (running, weight lifting) with no impact to strength or fitness. However, I have noticed a slight slurring of my speech with certain pronunciations - nothing obvious that an observer can see, but definitely something I have noticed over the last 3-4 weeks. I do not have cramps often at all.

My grandmother (maternal) died of MND when she was in her 60s. No genetic testing was performed.

I had an initial appointment with a neurologist today. Due to covid, this had to be performed remotely via telephone. He asked me a number of questions (Family history, signs of weakness, which side is my dominant side?, how often are the twitches and in which location, am I prone to cramps). I requested if he could put me forward for blood tests (per recommendation from my GP) and he said bloods at this stage are not important - and that he wanted to fast track me for an EMG for this Friday with "one of the best ALS specialists in the UK". He said he suspects something called benign fasciculation syndrome due to my age and explanation of my symptoms, but he wants to rule out ALS by making sure there is no nerve damage showing. This caught me by surprise as I was expecting to have some sort of vitamin b12 deficiency or thyroid problem.

So I open this thread firstly as more of a shock that I am being tested for ALS and secondly to document my journey in case this is similar to someone else that they can take either comfort from if it comes to something benign, or that it can at least provide answers if this story is similar to others.

I am lucky to have private healthcare in the UK so I can at least get answers relatively quickly and see the best specialists. It is looking likely I will have the EMG results by middle of next week and then I suppose I might have further tests from there including a potential face to face review - where he said he wants to look at my reflexes?
 

Nikki J

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Let us know what the emg shows. You have every reason for optimism
 

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Your GP could have ordered blood tests and that could be the next step after the EMG shows what the neurologist is expecting - BFS. He isn't really 'testing for ALS', he is ruling out that there is anything sinister happening. Let us know the result and all the best.
 

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EMG is delayed due to covid unfortunately. Not even private healthcare can speed it up. So I’m in a slight delay. Will notify as it comes through.

but yes I have no weakness and only muscle twitches all over body. Official guidance from doctor in the written referral I received a copy of said “most likely BFS but propose to use EMG to be extra cautious”.
 

affected

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So calm down now and wait - no one who has examined you, nor a single person here thinks this is anything sinister.
You can now choose to spend your waiting time in hell driving yourself to the edge of despair, or you can make the most of your time. Regardless you will never get that time back, so maybe since you can control 'how' you spend that time, taking control of that would be a good thing to do.
Come back and let us know the results once you have them, continue to speak to your doctor if you have further concerns. I wish you all the best :)
 

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Finally an EMG booked for Friday this week. Again no major weakness, I’m fitter than I’ve ever. Widespread twitches (legs / feet / arms / fingers / torso / lips / face) every 10 seconds 24/7 for over a year.
I will post the EMG results when it comes through.
Specialist this week did say he wants to bench mark the EMG results and possibly do it again in 6 month intervals to confirm long term diagnosis of BFS. So to be honest, a diagnosis of BFS is not confirmed until multiple clean EMGs over a long period of time have been confirmed.
Have you known anyone to progress from a BFS diagnosis on this forum to ALS?
Do you recommend I continue with EMGs periodically for a couple of years after a single clean EMG? Or move on after the first one
 

KarenNWendyn

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If the EMG is clean, definitely move on.
 

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Nope BFS does not 'progress' to ALS. Let it go or you will waste your life future worrying something you don't have.
 

SRM_BBC

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Hello. Just came out of my EMG. What a weird test I must say

the specialist conducting the test was opening explaining the results as we went through

the first part was an electrical pulse through my leg and then my arm. This was to check the signals? Which was normal.

secondly he put a needle in my muscles. Both hands / shins / thighs and then my stomach.

he said he could see twitches in every muscle group but said he could tell they were benign in nature and was certain I had BFS.

I Should get the written results on Tuesday and I will post them. He said he saw someone of my profile / age / history at least twice a week and that it was extremely common to have twitches in the body.
 

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One interesting thing. When checking the left shin , he asked if I had back pain. Why is that?
 

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You would need to ask him why he said that.
Huge congratulations on your very clear result of no ALS!
 

SRM_BBC

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See my EMG results
 

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SRM_BBC

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Conclusions
 

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Nikki J

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Congratulations. The conclusion was very clear. Try to ignore the twitches and have a long happy life
 
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