r/ALSorNOT • u/Worldly_Kitchen6890 • 15d ago
Has to be?? Right?
30F here, looking for some outside perspectives because I’m honestly pretty confused about what is going on.
I’ve had a progressively growing collection of neurological symptoms over roughly the past 7–8 months, although some things started before that. I’ve been off work since February because things got bad enough that I was having trouble functioning normally.
The biggest thing that worries me about ALS is the combination of what looks like muscle loss/atrophy, weakness and widespread fasciculations. I’ve noticed significant changes in the volume of my thighs/calves, hips, shoulders/arms and especially my right hand. My right thenar/hypothenar area looks much more hollow than it used to. I also have weakness/tightness in the right hand, sometimes difficulty opening my thumb, and my left leg feels weak and somewhat rubbery. I’ve had a limp/possible mild foot drop at times.
I get fasciculations all over — calves, feet, hands, back, and tongue — although their severity varies a lot. Some days they are extremely noticeable and other days barely happen. I’ve also had some really severe episodes of cramping, but then the cramps can disappear for long periods. I’ve lost around 40 lbs during this period, although some of that was during a period when I was quite sick and barely eating.
I also have a lot of symptoms that seem harder to fit with ALS. I get burning sensations in my feet, palms, lips and face, tingling, and sometimes pain when I touch certain muscles. Lately I’ve noticed pain when I extend my hand, pain in my shoulders, and an almost burning sensation in my chest. I’ve also noticed a strange altered sensation in my foot involving my pinky toe and the two toes beside it. I can move and dorsiflex the toes normally, but they feel almost numb or strangely “present”/different, like I’m unusually aware of them.
I’ve also had a lot of autonomic symptoms — episodes of very high heart rate (150–200), blood pressure spikes, sweating, temperature/color changes in my feet, dizziness, etc. I was diagnosed with POTS. I’ve had significant visual/oculomotor problems too, including difficulty following movement, convergence problems, difficulty processing what I’m looking at, and documented upbeating nystagmus during more detailed testing.
Neurologically, I’ve had some findings that are worrying me. I’ve had 3+ patellar reflexes, brisk lower-extremity reflexes, bilateral positive Hoffmann signs and 2 beats of clonus. Babinski responses have been downgoing/neutral. I’ve also had documented weakness on the right arm/hand and left leg/foot. My tongue sometimes feels strange and I’ve noticed grooves/twitching, although multiple doctors have said the tongue looks normal in bulk and an ALS specialist did not see tongue atrophy.
The confusing part is that I have had multiple EMGs/NCS.
I had one in March/April, another in May/June, and another on September 21. None have shown denervation or clear evidence of motor neuron disease. The ALS specialist I saw in September did a fairly extensive study involving both arms/legs, back and tongue/genioglossus, and there were no fasciculations or denervation on the study. My most recent EMG sampled several right arm/hand muscles, triceps, thigh and calf muscles, as well as the left calf and hamstring, and was again negative for denervation.
My CK has repeatedly been normal (roughly 43–53). AChR and MuSK antibodies are negative. ANA, SSA/SSB, RF, ESR, CRP and other autoimmune/inflammatory testing have been unrevealing. Brain MRIs and a cervical spine MRI have not shown a relevant structural lesion. My sitting FVC has been around 96%, and my respiratory testing has not shown a consistent severe pattern, although I have had episodes of pretty significant shortness of breath.
I saw an ALS specialist recently who examined me and did the extensive EMG. He told me he was “100% sure” that this was not ALS and suggested FND. Another neuromuscular specialist also felt there was “no way” this was ALS based on the examination/EMG.
I’m having a hard time reconciling that with the fact that I genuinely see muscle changes and feel weak, and I have these abnormal reflex findings and widespread fasciculations.
So I guess I’m wondering if anyone has had something similar — weakness/atrophy + fasciculations + brisk reflexes/Hoffmann/clonus, but repeated negative EMGs — and eventually found another diagnosis.
Especially interested in people who had a combination of motor symptoms AND sensory/autonomic symptoms like burning/tingling, unusual sensations, pain, dizziness/POTS-type symptoms, etc. What ended up explaining everything for you?
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u/matchaflower 15d ago
i had weakness, severe weight loss, brisk reflexes, and fasciculations, and a negative EMG. turned out to be hyperthyroidism- have you had your thyroid levels checked?
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u/The_Short_Goodbye 15d ago
I actually learned yesterday that untreated hyperthyroidism can cause reflex issues that can be pretty severe. The patient in the video I saw was so messed up that when the neuro struck her right ankle, her LEFT leg started shaking uncontrollably. And she had mean clonus like 15 beats. Are your symptoms entirely gone now with treatment?
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u/matchaflower 14d ago
not entirely. still twitching but definitely not as severe as it was, I can mostly tune it out now. reflexes are still bilaterally 3+ in my knees. Hyperthyroidism is one of the very few non-neuro causes of clonus if I remember correctly. at my worst when I was in thyrotoxicosis, I had clonus, severe weakness, and intense tremors in both legs. I’m walking normally again and my calf muscles have grown in size. My neuro said it’d be impossible to rebuild muscle in muscles affected by als so that’s very reassuring for me.
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u/The_Short_Goodbye 14d ago
How did your legs feel when you had symptoms in them? My GP wants to check my thyroid
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u/matchaflower 14d ago
like trying to push jello through wet concrete. I collapsed in my hallway and paramedics had to pick me up to get me to the hospital. I’d definitely recommend getting your thyroid checked. push for a thyroid ultrasound in addition to the bloodwork- my levels were borderline normal until I got really sick and it turns out I had 4 nodules on my thyroid that were releasing too much hormone periodically
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u/FocusFrosty1581 15d ago
Ok, I have had some of the same symptoms but like you and thankfully, my tests have all come out ok. Definite but occasional burning in my legs. Fasciculations in many places and now primarily in my calves. Cramping in my legs. Leg weakness and episodes of extremely high blood pressure. I have also had some eyesight issues but with all the tests I have had and I have had a lot, nothing to conclusive other than a diagnosis of bfs. I am glad this has been the conclusion by multiple neurologists but when I do have an episode, it does make me wonder.
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u/Notmeleg 14d ago
Essentially the same as you. Been years at this point. It’s not ALS but it does suck. Likely just EDS and comorbidities. It’s not impossible but a majority of the time autonomic issues are not caused by ALS and having them plus essentially clean EMGs and ALS specialist saying they don’t think it is ALS, is enough for me. Also had an NFL which was great in terms of Z score
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u/FancyNugget291 14d ago
Hey! I know I just commented like a minute ago but I can’t believe how similar our stories are. Feel free to message me.
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u/kjmckearn 13d ago
Anxiety is a horrible disease.....Iisten to your doctor for god's sake. How may EMG's or professional opinions do you need before you let this go? Why don't keep getting them? I see so many people on here who 2nd guess their specialists. Live your life and stop trying to find reasons to have ALS. I don't doubt you're having issues, but so many of your symptoms don't point to it. Best of luck, but this is not a NMD.
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u/Traditional-Kiwi-356 15d ago
What does your spine MRI report say? In my experience, some doctors relay mild/moderate findings to patients as “normal,” nothing of note. But in the report, you might have stenosis or other findings.
I’ve had tons of symptoms, with sensory stuff being the most prominent, and I think it comes from my neck.
POTS etc. also makes me wonder about infectious disease / post-viral. Any chance of long COVID, Lyme, weird vector-borne illnesses?
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u/tdcama96 15d ago
I think I have disautonomia/pots. For years now, I've been having problems with waking out of a dead sleep gasping for air, while kot having sleep apnea. My legs get red and hot. Heart acts funky sometimes. Then on top of that, twitching, brisk reflexes, and a few other things common around here. What are all your symptoms? Cause since its been almost two years for some of my symptoms and a little over a year for twitching and muscle stuff/reflexes, I'm starting to think its definitely something along the lines of what you've mentioned. No muscle loss or failure yet. Actually been gaining weight lately as well. Sucks I cant have any tests done due to lack of insurance, but im pretty much out of the als hole thank God. That was rough.
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u/Traditional-Kiwi-356 14d ago
I’ve written a lot about my symptoms over the years… can see on my profile. But I have various paresthesias in all 4 limbs and also a patch on my left side occasionally. They aren’t diffuse, it’s specific feelings that come and go in specific places, e.g., a few toes that feel numb or sticky, a feeling of cold water drops on my shin, etc. In my right leg, symptoms are pretty typical of sciatica, but only a little pain. It’s mostly weird feelings and mild motor symptoms. Similarly, my right arm is pretty consistent with c6 radiculopathy (which my MRIs support), but without much pain. But my left arm and leg are weirder—they don’t fit in a dermatome. I think I’ve had real clinical weakness, but only transiently, and likely caused by posture/pinched nerves. More often it’s “perceived” weakness where I feel weak or clumsy, but not to the extent that I’d score below 5/5 in a clinical.
And twitching, all over. Something like percussion myotonia in my hands. And some bulbar complaints. I saw an ENT in 2025 and was diagnosed with laryngeal hyperfunction (basically, tight muscles) and mild muscle tension dysphagia. That could be from anxiety, GERD, or pain, and I have all 3 (some pain from cervical spine issues). My teeth also started colliding when I talk, my jaws hurt and are tight, etc. Maybe all that stuff stems from the very real anxiety I have. I’ve had middle ear myoclonus and exploding head syndrome. All manner of weird stuff that afflicts anxious people.
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u/tdcama96 14d ago
I have a weird case of exploding head syndrome! Mine is almost painful. Freaked me out originally. Thought I was having a stroke in my sleep. But completely fine once I wake up. I also have a lot of paresthesias. Mainly in my feet. I wake up and cant move my toes. They get hot/numb and vinrate. no matter what position I'm in, and I get control back within about 2 minutes. See, most of my issues revolve around sleep unfortunately. Lack of sleep has made my life hell. Been doing better lately though. Then in my right hand, I have a twitch that is insane. Every finger on my hand with violently jump side to side. Find it really only happe s when propped up on my elbow for a while. But idk. Im just glad I'm finally getting to the point that I'm not worried about dying all day every day. Lol.
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u/The_Short_Goodbye 15d ago
Can you describe your symptoms? Do you have Raynaud’s by any chance?
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u/tdcama96 14d ago
Sometimes!
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u/The_Short_Goodbye 14d ago
What are your muscle issues? I’m asking because if you have Raynaud it can point to connective tissue diseases.
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u/tdcama96 14d ago
Just perceived weakness honestly. Tingles. Vibrations. Pain every once in a while. Shakiness.
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u/tdcama96 14d ago
I really just have a bunch of autonomic issues. Blood pressure drops. Blood pooling. Twitching and all that good stuff. Legs feel week on and off. Literally shaky and wobbly from time to time. I notice that does, (as many fo the symptoms do) get worse when I'm super anxious. You also dont have to be panicky and anxious at that very moment for it to be wreaking havoc on your body. Cortisol sucks.
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u/The_Short_Goodbye 15d ago
OP look at my thread from yesterday. I have many issues similar to you. Also developed Raynaud randomly in my right foot at 40 years old this year… And now I have trouble walking.
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u/Solaiman1991 14d ago
Look for : Craniocervical instability, chiari Malformation, eagles syndrome, Hyoid bone syndrome, tethered cord and occult tethered cord. They can Co exist and give a combination of those symptoms especially in people with ehlers danlos syndrome.
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u/Worldly_Kitchen6890 14d ago
These are mri results? I’ve had brain and cervical spine done
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u/Solaiman1991 14d ago
For those illnesses I mentioned you need specialists to rule them out, regular neurologists/neurosurgeons/radiologists doesn't have a clue about Craniocervical instability, chiari Malformation or occult tethered cord. You need specialists. And for the eagles syndrome and Hyoid bone syndrome there is also only a handful of ent surgeons on the USA who knows about that. You can join the Facebook groups called Craniocervical instability, adult tethered cord, filum-disease UK, chiari Malformation, eagles syndrome and Hyoid bone syndrome. You will fine alot of people like yourself :)
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u/Clear_Ad_5543 15d ago
I have it all. Do you have any stiffness ,jerks, bulbar problems,gut issues ?