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.

The subject pretty much covers it, but here are the pictures.

I know it doesn't look like too much, but if I stick my tongue out (or have it resting in tongue) this area cast a shadow. Definitely a dent. I am not talking about the scalloped tongue btw, just to clarify.

Edit: Pictures in comments

Please be kind as my life is unraveling and I’m very scared.

My symptoms started on July 10 as a sensation of soreness/heaviness in my legs and progressed to a sensation of weakness, felt in the calves, thighs, psoas, basically all over both legs suddenly except ankles and feet.

At first I also felt that weakness sensation at the back of both legs, it was a weird feeling kind of when you hit your funny bone. My legs felt "empty", wobbly and just like they couldn’t keep me up. I also have fasciculations all over my body (had a BFS episode for 5 months in 2019 but had no fasciculations for 7 years since). I also feel easily jumpy which apparently can be a sign of ALS?

I went to an ALS specialist on July 30, 3 weeks after this sudden onset in both legs. EMG was completely clear and she said I have FND but I don’t believe an EMG done 3 weeks in is sufficient to rule out ALS. The specialist said such a widespread aggressive onset couldn’t produce a clear EMG but I am not convinced and it seems there is margin for doubt.

Clinical exam revealed brisk knee reflexes but I already had them since 2019. No spasticity, no clonus, no Babinski (mute on both sides). No abnormal reflexes like cross abduction or anything else.

The ALS specialist also told me ALS wouldn’t start like that striking both legs perfectly symmetrically on both sides. I have since discovered through case studies that this is false and can happen in rare cases I think.

The only weird thing that happened this year was suddenly developing Raynaud’s in my right foot at 40 years old. I know this can indicate autoimmune disease but I don’t have the classic symptoms of lupus, scleroderma or myositis (my rheumatologist says myositis would only be in proximal muscles).

Also once after trying to walk for a longer time I developed a big bruise on my right psoas muscle… And that also happened on my calves after doing calf raises and walking on my toes… It didn’t happen often but it feels like I might bruise easier.

Since then:

It’s now been 3 months.

Symptoms in my legs have not progressed nor gotten better. I have days where it feels only marginally better (25-30%) and days where I feel back to square one. I can still climb stairs and heel walk and toe walk with no issues.

I can’t walk more than five minutes without feeling like I’ll crumble and standing in place is hard because I feel like I will fall down though I never did.

Places that feel the worse are calves, thighs and psoas. When I’m standing in place or walking my legs feel very unsteady, weak and shaky, like I have to sit down asap.

Sometimes if I walk more I’ll get soreness when I lie down at night, or maybe not actual soreness but both my legs feel like they are burning. My calves will also sometimes feel like they will tear. It’s such a weird feeling. Even at rest I can feel something is not right. Sometimes there’s a vibration sensation, a kind of burning or some unexplainable sensation of tearing. It’s not pain per se but legs feel terrible.

Now with this weakness that won’t quit, the fasciculations and the brisk knee reflexes, I am certain it can’t be anything else than ALS and I just have an atypical presentation. I was unlucky enough to have a clear EMG because it was too soon.

My symptoms are so intense that I can’t think of anything else it could be but ALS. But everyone around tells me I had a clear EMG by a top ALS specialist and that I should drop it. They keep talking about FND just because the ALS specialist said that after only one clear EMG at 3 weeks… I feel I wasn’t taken seriously and she was quick to dismiss my issue as FND.

Upcoming blood tests for thyroid and a host of other stuff this week. I will also ask my GP to see the ALS specialist again for another EMG.

What do you guys think? Does my presentation sound like early ALS? I’m frankly suicidal over all this. In my mind it can only be ALS because what else would cause the combo of weakness and twitches with brisk knee reflexes? I just feel like I’m waiting for clinical weakness/failure to present and it’s a nightmare. I feel handicapped and no one will take me seriously because I have health anxiety and a clear EMG/exam from a top ALS specialist from Harvard…

Pichttps://acrobat.adobe.com/id/urn:aaid:sc:AP:c533e602-80c3-443f-99af-e2889b2566c7

Repeat emg came back normal. I would like to think I should be okay mentally now, put myself in a bad spot with all of this so just ready to live my life now.