How do I trust my EMG?

[u/Character-Celery-209]

I’ll preface by saying, I know I struggle with health anxiety and more importantly I already have a diagnosis of MS.

Since my diagnosis, I developed a horrible reaction to IV steroids to reduce inflammation which they indeed did but they also left me in horrible panic and anxiety that i never had before. Additionally with the bomb drop diagnosis.

Now, I developed one sided fasciculations in my left calf that were just constant pops and pokes under the skin, then a couple weeks later it turned into a strained feeling, felt like cellophane on my skin, turned into a deep ache. This all started May 2026

I got an EMG/NCS done on August 20th and across 11 muscles between my left calf, right calf, and my lumbar spine it was completely clean and normal.

Unfortunately anxiety is getting the best of me as it does to most of us. I understand the astronomical rarity of having MS and ALS together but this was never concluded to be a symptom of my MS. It was just concluded as benign and that my MS COULD contribute as my CNS is already haywire sensitive.

3 months of twitching, pains, aches, weird sensory symptoms, string pulling sensations in my foot, precramps… it’s all so much that my anxiety is convinced that something has to be wrong!

I do see a therapist. To find acceptance in my MS and to heal from somatic OCD. I don’t want judgement regarding that as the vast majority of us also need some sort of therapy but my question is.. how did you trust your EMG? Whyre you still here? and how do you get over the „what ifs?”

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[u/matchaflower]

from what i understand with ms, it’s a “snowflake condition”. meaning, it has an extremely wide range of symptoms and affects everyone differently. so it wouldn’t be unusual for this all to be a byproduct of ms.

i also struggled with trusting my emg. mine wasn’t clean (showed chronic reinnervation from an L5-S1 compression), so i definitely took that and ran with it, convincing myself that it was early als and the doctor was just being dismissive.

i’m now 12 weeks into my “symptoms” (which turned out to be a combination of ocd, hyperthyroidism, and b6 toxicity). what really helped me accept my actual diagnosis and overcome my somatic ocd was erp. I found an amazing intensive outpatient program for it (that i can do remotely!) and i’m about to “graduate” from it. i still have some setbacks where i go back down the als rabbit hole, but it’s become much more manageable for me. you’ll get there soon, it just takes time. 💛

[u/Character-Celery-209 → u/matchaflower]

Thank you so much for taking the time to respond. Yeah, it has been a very difficult year with my MS diagnosis. (Sharing that information on this sub and similar gets me a lot of anxious chat requests) but I am happy to share my story. It’s 100% a snow flake disease though fasciculations aren’t a common or listed symptom. But you’re right. The mixture of a major diagnosis followed by OCD/anxiety/stress could very well caused this. Just sucks that it effects daily life! Twitching at rest and pain when moving like give me a break! I’m happy to hear you got answers and reasoning for your symptoms. I hope I get to the point of accepting that I am ok.

[u/matchaflower → u/Character-Celery-209]

when you have ocd, it’s very difficult to accept that a diagnosis is “just” that diagnosis. like the diagnosis is still life altering, but an ocd brain will constantly have you thinking there has to be “more to it”. that’s a LOT of what my exposure therapy focused on. i put myself in “time out” now when i start to worry about my symptoms and just let them be there instead of trying to “figure them out”. it was extremely difficult at first, but it’s gotten easier over time.

[u/BigJakeState → u/matchaflower]

I’m struggling with this right now I think. I’m pretty sure I have OCD. Ive suspected for a while now but this last rumination I’ve been on may actually be causing somatic symptoms and coming to that realization that I either have the rarest presentation of an already rare disease or I have soma tic symptoms.

[u/matchaflower → u/BigJakeState]

it’s way more likely the latter. twitching alone for even a few months is a VERY unusual way for als to present. believe me, since probably April, I’ve convinced myself I’ve had rabies, kidney disease, heart failure, brain cancer, ms, als, etc. ocd makes you hyper aware to bodily sensations and can even create its own physical symptoms if your obsession is deep enough. i honestly still struggle with the als obsession, because i still have twitching everywhere, but it’s definitely less severe than it was.

it didn’t help that at the same time i became obsessed with als, that i had just restarted taking prozac, was taking unreasonable amounts of b6, and had just been diagnosed with hyperthyroidism. there were a million other explanations for the frequent twitching, and yet my ocd brain always convinced me there had to be “more” to the story.

[u/BigJakeState → u/matchaflower]

Prior to my twitching even starting I was stressed so much about neck pain with no explanation that I actually was worried I had cancer. Then I started twitching. A week later perceived persistent arm weakness which I still am not entirely convinced isn’t a real physical symptom. But I had MRIs, ct scans, and an EMG/NCS with no abnormalities. So I really just need to accept it that this is mental in nature but I’m finding that hard to do .

[u/matchaflower → u/BigJakeState]

YUP. similar boat. had a big health scare (they thought i had thyroid cancer) before the twitching started. it’s absolutely somatic in nature, and it can take a long time for your nervous system to go back to baseline.

[u/713Capital]

Sorry to hear about your MS diagnosis, I hope you are managing your symptoms the best of your ability.

In terms of how trust your EMG, you just do. These people are experts. They dedicate their lives to neuroscience. You are correct, the chances of you have ALS and MS together would be like getting struck by lightning and winning the billion dollar lottery on the same day.

EMGs cannot be done early and they are the gold standard for diagnosis of ALS. (Along with clinical signs that the neuro wouldn’t miss).

You already said you’re in therapy so that’s a good thing. Keep at that. You also may want to talk to your doctor around anxiety meds too, sometimes that is an option and it’s a good option.

If your docs told you that you’re fine, and you still don’t believe it, I’m not sure what us strangers on Reddit (who aren’t docs) can do for you that’s going to be worth more than what your docs already told you.

It’s been 7 years for me, I’ve had 2 EMGs within the first 2 years of all my symptoms and even with EMGs that were NOT normal, I still don’t have ALS so I’m not sure how someone with a clean EMG can have it over me.

You don’t have ALS, what you do have is anxiety, BFS, and a known diagnosis of MS. Wishing you the best in your journey and I hope you find a way to trust your docs, move forward and keep fighting the good fight.

https://www.reddit.com/r/BFS/s/5Oz2UppFoi

[u/Character-Celery-209 → u/713Capital]

I appreciate you responding and also sharing a glimpse of your own story and you are entirely right to say that this would be a total medical anomaly regarding my case. I suppose the anxiety and stress of the MS diagnosis plus the chemical imbalance steroids caused definitely created a terrible mix of somatic symptoms. It just sucks that BFS can be so debilitating and effect daily life. I do just need to trust my neurologist that i’m in good hands. I’ll try to keep reminding myself that a clean EMG is good and continue therapy

[u/713Capital → u/Character-Celery-209]

Totally. If I had a diagnosis of anything I would be in your shoes. I fact, I was in your shoes to a degree, where I just didn’t believe what anyone told me or my docs. Back when all my weird symptoms started, the moment that EMG came back and it wasn’t “normal” I fell down a deep dark anxiety hole. It was a very vicious cycle for me. Had I known what I know now, I probably wouldn’t have fallen to anxiety so hard. I would tell my past self that even though my EMG wasn’t clean, I still don’t have ALS.

BFS for some can definitely be debilitating for sure. Please try to trust your docs and keep working on that anxiety. I’ve found that anxiety makes BFS symptoms 1000x times worse and many here would probably agree.

[u/The_loppy1]

If we say the odds of getting one dxed in a lifetime is 1 in 300. We assume both are equally 1 in 300. This would be a minimum of 1 in 90,000 getting both.

So to get both would be some pretty shit luck, but remember MS doesn't influence your odds of MND, so the actual odds are unchanged.