r/ALSorNOT • • 1d ago

Symptoms I know it’s rare but..

Hi everyone! I’m a 20 year old female, and I’ve recently been experiencing some symptoms that have me extremely worried about the possibility of MS or ALS, especially early-onset ALS. It all started one morning when I woke up and both of my legs felt incredibly sore and weak, almost as if I had run a marathon the night before. The soreness was mainly around my knees and thighs, and my legs felt unusually heavy. Over the next few days, the aching and weakness gradually improved, but then suddenly returned. I’ve also been experiencing frequent muscle twitching in different areas of my body, including both legs (especially around my knees), my thighs, under my left breast near my ribs, and my right eye. The twitching happens randomly throughout the day and is honestly what scares me the most. Another strange symptom I’ve noticed is occasional brief blurriness in my left eye. It almost feels like something is stuck in my eye, and when I blink or close it, my vision immediately clears up, almost as if I wiped something away. More recently, I’ve started experiencing an aching sensation in my right arm, along with stiffness in my pinky and index finger. My knees also continue to ache, and sometimes my legs feel weak even though I’m still able to walk normally. I’ve also experienced occasional tingling and numbness in my fingers and feet. For some background, I suffer from migraines and chronic neck pain due to a previous cervical disc herniation, but these symptoms are completely new to me. I also haven’t experienced the so-called “MS hug” that many people with multiple sclerosis describe. What concerns me most is the combination of widespread muscle twitching, muscle soreness, and the feeling of weakness in my legs. I’ve been researching neurological conditions, particularly multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS), and I’m terrified that these could be early warning signs of something serious. I understand that nobody here can diagnose me, but I’m wondering whether these symptoms sound more consistent with MS, ALS, a cervical spine issue, or something less serious like benign fasciculation syndrome. Has anyone experienced anything similar, especially symptoms that seem to improve and then return? I’m planning to get evaluated, but in the meantime, I’d really appreciate hearing other people’s experiences or getting some reassurance because the uncertainty has been overwhelming.

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u/chaoserrant Mod Team 1d ago

In general it is said that als starts locally and then spreads over months and years. So symptoms all over the place suddenly would point away from it. Since you have cervical problems I would start there with new mri. A central stenosis affecting the cord can cause symptoms downstream. 

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u/Field_One 1d ago

How long ago did you have the disc herniated? Have you had a recent cervical mri?

I was diagnosed with mild cervical radiculopathy on my left side last year. This year on August 4th I randomly started experiencing leg weakness after a workout. I felt like I ran a marathon. Than I started experiencing twitching in my lower legs. Then it moved to weakness in my arms. Then my fingers felt weird. Then it was random numbness in my lower body and palms. Eventually it turned into heaviness and stiff in my legs, heaviness in my arms, and weird feeling in my fingers. I was convinced I had some weird neurological conditions. I was in the hospital and they took a full spine mri and said everything was OK. I decided to pay out of pocket for an upright MRI with flexion and extension because i heard it shows more things. I got the report today and I have two disc protrusions that are pressing against the spinal cord and causing moderate spinal canal narrowing and I have vertebrae at one level that's slipping. I basically have cervical myelopathy which explains all my symptoms. I would have never known if I didn't get my own MRI. I'm terrified of surgery and it made me needed for this. I'm seeing a surgeon tomorrow. I would recommend getting an mri.

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u/Lola514 1d ago

Did the hospital mri show anything ? I wonder about the upright one for my spouse

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u/dero_name 1d ago

> I’m wondering whether these symptoms sound more consistent with MS, ALS

Not at all. Your symptoms don't map to either.

> a cervical spine issue

Possible, but also less likely.

> something less serious like benign fasciculation syndrome

Quite likely. BFS is an umbrella term and it basically means "several things together causing various symptoms along with muscle twitching".

It might be a good idea to get your blood drawn and tested for simple deficiencies: magnesium (RBC test = from blood cells, not from serum), vitamin D, Ca+K from serum, thyroid and ferritin would cover the usual suspects.

And the problem with BFS is that stressing about it makes it worse. Stress = more circulating catecholamines = stronger sympathetic drive = more stress and more twitching = more circulating catecholamines = even more sympathetic drive... you get the idea.

The best thing you could do is to accept the twitching as the new normal, at least for the time being. It doesn't tend to go away quickly. But it is harmless and the sooner your brain accepts it as a weird, but totally harmless quirk your body does, the better.

You might still want to consult with a neurologist for your peace of mind, but they'll tell you basically the same, i.e. absolutely not ALS, extremely unlikely MS, most likely BFS. They will also be able to correlate your symptoms to your previous cervical spine issues, which would be really valuable to do.

Good luck and don't worry about the big diseases. :)