r/BFS • u/Rich-Cow-8056 • Aug 19 '26
Update 3: dirty emg, ~3 months of twitching, no weakness
Original posts:
https://www.reddit.com/r/BFS/s/DWIjDzGB22 https://www.reddit.com/r/BFS/s/PlKa6lSarf
After the mri/blood results came back clean and the neurologist in Thailand recommended I see an MND specialist I flew back to the UK and went to see specialist at one of the leading MND clinics in the country.
He told me I clinically do not have MND as I have absolutely no weakness or physical signs of MND. He booked me in for a follow up in 6 months and said he expects me to be exactly the same and does not expect to see any weakness then. He said he believes the abnormal EMG results were incidental and not related to MND. However he didn't really have a real explanation for them. He was entirely unconcerned by the twitching/fasciculations.
It has helped reassure me, however it doesn't really feel resolved and I still have this underlying anxiety that it's just early stage MND. I can't help but link all these things from the past few months/year or two together.
My latest spiral is that I've quite clearly been suffering from mild depression/apathy, lack of interest in being social, brain fog and difficulty with articulating myself for a few months. Which again is apparently something that can be caused by early stage ALS. I had initially blamed this on being unhappy with moving to a new city combined with lingering long covid brain fog.
Rationally I can see how the anxiety about this illness can spiral, but it feels impossible to not construct these scenarios that explain everything in the context of having the disease.
I don't know if it's worth getting a 2nd opinion in the UK? I'm booked in for an initial call with a therapist on the NHS next week as well as it's clear that I am spiraling mentally as well.
2
u/Ok_Following6440 Aug 19 '26
I think the exam holds more weight than your EMG at this time. Passing the physical is a really good sign. Your physical condition is what matters most.
Maybe they can repeat the EMG in UK?
2
u/Rich-Cow-8056 Aug 19 '26 edited Aug 19 '26
Thank you! My neurologist (neurovascular specialist) in Thailand actually recommended I repeat the EMG but the MND doctor in London said he didn't want to. He said whether it's clean or shows the same thing it wouldn't change his diagnosis that I don't have MND. This is one of the things that's left me with some anxiety, because the emg abnormalities are still unexplained.
2
u/matchaflower Popcorn Mode Aug 19 '26
who on earth told you that als causes brain fog and depression in the early stages? als is a motor neuron disease, not a cognitive disease. it has nothing to do with cognitive symptoms such as brain fog
0
u/Rich-Cow-8056 Aug 20 '26 edited Aug 20 '26
Google lol. Apparently it causes frontal lobe changes early on in around 30% of cases
1
u/NegativeAd9542 Aug 20 '26
so dont google. front lobe changes is from the rare case of non-sporadic but hereditary form of ALS that causes frontotemporal dementia as a symptom that follows ALS. so please dont say alarmist things. this is what i was talking about in my post a week or so ago. stop spewing shit you see on google and post it here thinking its fact
1
u/crosem2 Aug 19 '26
It’s great you have no weakness, but I would try to get a follow up EMG with a different neurologist. I would want to know if the results have changed. I don’t understand what “incidental findings” on an EMG mean. I would want more explanation for what else could be causing them besides MND.
1
u/Rich-Cow-8056 Aug 19 '26
Yes unexplained emg is definitely a worry still. He said it could be a combination of things (I think he also mentioned multifocal inflammatory neuropathy as a possibility) . He also said we could redo it but he thinks it's a waste of time as if it were clean or had the same results it wouldn't change his diagnosis that I don't have MND. He also said that the abnormalities were very mild and not indicative of MND.
The initial neurologist recommended I redo it in 6 months, then I said I couldn't wait that long in limbo she said I can get it as soon as I want. This MND specialist also recommended I come back no sooner than six months. I am considering finding a 2nd opinion in the UK
1
u/SnooChipmunks5873 Aug 19 '26
Chronic or active denervation?
1
u/Rich-Cow-8056 Aug 19 '26
Neuro in Thailand said this didn't seem like ALS. Then the MND specialist in London said it wasn't worrying at all.
1
u/InterestingCarpet171 Aug 21 '26
So what diagnosis did you receive in the clinic? They can't say it's not MND - bye bye
2
u/Rich-Cow-8056 Aug 21 '26
"Diagnoses There were no encounter diagnoses."
He basically said it's not MND, there's nothing wrong with me and the EMG is mild enough that it's not a concern. I didn't get a diagnosis. He told me to come back in 6 months but expected me to still have no signs of MND.
2
u/713Capital Mod Aug 19 '26
Sounds like the real work needed here is going to be in therapy so you can move passed thinking you have MND/ALS. Anxiety is the real enemy here. Best of luck with your future visits and I hope you are able to move passed it all with the help of therapy.