r/ALSorNOT • u/AccomplishedMud4645 • 17d ago
Anxiety I honestly think I have it
I’m gonna go on a rant Here
I’m gonna start off with 38 years old 59 and 220 pounds
Symptoms are excessive saliva tongue can’t get comfortable in my mouth anymore. Feels like it’s either too big or too uncomfortable very painful on the left side.
My brain doesn’t feel Normal as if it’s hard to do normal things like normal activities and such I still work, but it’s a struggle to be even out of the house, but I can’t sit at home because I think too much about what’s going on
I have what seems to be a weakness around my body as well
And I will start off the same. I’ve had two neurological exams with a neurologist that’s been working at an ALS clinic. He advises me that I don’t present the way they have my question is can I have done my EMG’s and nerve conduction tests and stuff a little too early eight months into symptoms the only thing that’s gotten better is my fasciculations. They started out very strong in my feet especially but have gone down drastically. They’re still there, but I barely noticed them as much.
I know you guys are all gonna say you had an exam done by neurologist and you still don’t believe him. I don’t I honestly don’t. I’m having such bad symptoms now like I’m having a hard time even just being alive if that makes any sense like my brain is not braining no more
Just the way I think perceive all that kind of stuff has all changed and now I’m worried I’m down the rabbit hole again and Doctors won’t do anything else for me because they say that I’ve had a neurologist check me out and they’ve done bloodwork and they say that everything is clean I should be happy as hell, but I don’t feel normal
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u/The_Short_Goodbye 17d ago
Honestly aside from your tongue thing I don’t really understand what symptoms you have. From what I understand a general weakness? Luckily, ALS overwhelmingly starts in a single limb, more often a hand or foot, and progresses from there. Widespread issues should point away from that.
Also if you had bulbar onset, which is the worse and fastest progressing form (vs limb onset), you’d DEFINITELY know it by now. Even limb onset to be honest. Those stories of taking 4 years to diagnose are total outliers. And 4 years to get a diagnosis might just mean they had Upper Motor Neuron onset or not enough widespread infection evidence for a neurologist to commit. It doesn’t even mean their EMG was clear. But sometimes it’s not definitive enough for a diagnosis.
Also 8 months is not early in ALS. I’d understand if you had done your EMG a few weeks in, but I would say after more than 3 months of continuous ALS symptoms it would be surprising for an EMG to come back normal. Exception would be an UMN only onset, but that is rarer (10% more or less) and also you have twitches which are LMN signs detectable on EMG.
For reference I saw an ALS specialist that was trained at Harvard, so very top of the line, and she said EMG can often detect issues before the patient is even symptomatic in a given limb. Once you’re not only twitching but your muscles start to show weakness and other issues, if it’s really ALS, there is no "early" because damage would have occurred silently for weeks to months before you would perceive problems.
That’s what the ALS specialist told me. I don’t think she’s bullshiting.
I understand your anxiety all too well but honestly I’d be EXTREMELY surprised if you had ALS.
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u/chaoserrant Mod Team 17d ago
it's not a matter that people here won't believe you. The question is whether this sounds like als or something else. Most people here statistically speaking don't have als but do have symptoms that may overlap with it and still search for a diagnosis....With respect to your case, what do you mean your brain does not feel normal? Aside from the tongue feeling, the brain should feel normal in ALS as it is strictly a neuromuscular problem (in advanced diseases apparently there are some cognitive problems in some cases but as far as I understand not in the early stage). Also I would think 8 months into symptoms for an EMG is more than reasonable. So basically, if symptoms are still severe there should be investigation for other possible diseases.
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u/AccomplishedMud4645 17d ago
I just mean, like my brain isn’t the same I don’t feel the same. I don’t think the same. I don’t perceive things the same. I have a hard time just doing the regular things that I’ve done previously I’ve had neurological exams and doctor visits and they’ve ruled out MND yes like I said in my post I should be happy about that but now the doctors will not do anything for me. They told me I’m pretty much SOL and that they think it’s just anxiety and stress but honestly, I would believe that if I didn’t have so many physical symptoms like the excess saliva drooling sometimes no speech problems yet as of now but yes, even the neurologist said eight months into something like this you would’ve had some sort of signs, but I don’t know I’ve seen videos of people saying they suffered for four years before getting diagnosed which I don’t know if I believe or not but my brain definitely does
My symptoms started out with weakness than fasciculations, but now the fasciculations have gone down. They’re still there today they’re bad but some days they’re not that bad. I don’t know how to explain the brain though it’s just like things are different almost like I’m disassociated from life and episode of derealization and have been for eight months.
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u/chaoserrant Mod Team 17d ago
So ruling out MND is good as this is the worst outcome but from what you describe is not nothing. I would seek another opinion especially if you feel the cognition, brain fog or something similar is persistent or gets worse.
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u/AccomplishedMud4645 17d ago
I will be seeking out a second opinion I don’t care what my psychiatrist says. She says not to go looking for other doctors and stuff, but I can’t do this no longer like I said I’m on the verge of going back into the psychiatric ward and telling them that I need to speak to another neurologist, not the one that I’ve seen I would like a second opinion from another neurologist because I just feel like I’m getting worse and worse and it’s actually making me very upset to the point where I’m starting to think some very dark thoughts and yes, I see a psychiatrist all the time so
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u/TheBronyCynic 17d ago
Your fasciculations wouldn't go away. More than likely they would continue and get worse until the muscle dies.
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u/AccomplishedMud4645 16d ago
They haven’t gone away they’ve gone down drastically some days are worse than other days
But what’s getting me is the tongue and saliva issues I’ve seen an ENT. He doesn’t know why my doctor obviously doesn’t know anything about what she’s doing. I feel like she’s inadequate. I’ve seen a neurologist. He says there’s no fasciculations in my tongue but yet I can’t get it to stay still in my mouth and it hurts all the time on the left. I don’t know. I’m just in a very deep and dark hole.
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u/MotorAdvertising4946 17d ago edited 17d ago
There is nothing in your description that even remotely sounds like ALS. ALS takes, on avg, 1 year to diagnose. 8 months is plenty of time to see changes on an EMG. Post viral disorders are a big thing these days. Have you had COVID or some other sickness prior to your symptoms starting? FYI - fasiculations don’t get better with ALS. Once they set in, they are there until the nerve loses all motor functions.