Concerned and looking for some input/advice

[hollyhawk25]

Hi! I am very reluctantly posting here. I have read the post that this forum requests all new people to read before posting.

I have known someone who had ALS (not a family member) and was not close with this person, just knew of them. I’m 40 yo female. Last year, in February 2024 and after a nasty round of pneumonia and levofloxacin, I began having a major uptick in twitching. I saw my PCP and was sent to a neurologist. He conducted an EMG and it was normal. He also ordered a brain and full spine MRI. I had some small non-specific hyperintensity flares show on the brain MRI.

I’ve had cervical neck trauma that resulted in 2 herniated discs being removed and replaced in 2022. I had some twitching that started then, but by no means on a daily basis like it has been for the past year. I always just chalked it up to neck issues until it became a daily all day thing. I also have bulging discs making nerve contact in cervical and lumbar spine, but not severe enough to need surgery. I had come to the conclusion that I would just have to accept the fasciculations as my new norm.

However, in March 2025, while showering I noticed a dent in the inner front part of my calf on my left leg. It’s noticeable at a glance. So I just watched it and made a follow up with my PCP for a month out. By the time that appt rolled around, there was also a visible dent in the area by shin, same leg.

I was told to follow up with my neuro, so I did, but he didn’t say much and referred me to a rheumatologist. My appt isnt for another 2 weeks and waiting is so hard, especially when you’ve got kids that depend on you.
I can still walk just fine. I’m not tripping or off balance. That leg/foot/and ankle does ache and is sore though. The neuro did not want to do another MRI or EMG.

Of course, as anyone reading this will already know, I’m here because I made the mistake of googling and am a little concerned.
Should I have requested another EMG or MRI? Any input from anyone on this forum would be greatly appreciated.

 

[lgelb]

I would wait and see what the rheumie says. But I think the odds of ALS are very low considering if atrophy were caused by motor neuron damage, you would have functional impairment. Also the quinolones (levofloxacin is one) are notorious for the kinds of issues you describe.

 

[hollyhawk25]

@Igelb Thank you for your response!
I have also done some research on toxicity caused by quinolones and thought for sure that’s what was happening until I saw the noticeable dents and then my concern grew. Which is what prompted me to reach out here. Maybe it’s somehow caused from the Levo though.
I definitely had some major side effects when taking the levofloxacin and most of those manifested in the left leg while on the medicine- felt like my foot and ankle were going to explode while on it.

 

[hollyhawk25]

Sorry, one question. Is it typical for twitching to start a year before any type of noticeable atrophy? Or does atrophy associated to ALS start much sooner after twitching begins?

 

[lgelb]

It's the neurogenic atrophy (atrophy with clinical weakness) in ALS that is the key feature, not twitching/atrophy. Twitching isn't necessarily part of ALS onset at all and is a part of many completely harmless named and unnamed conditions. When it is part of onset, we would not expect a year between twitching and weakness, and we wouldn't see atrophy before significant clinical weakness.

 

[hollyhawk25]

Quick update and another question: I did bloodwork and X-rays with a rheumatologist last week and have a full body MRI this coming Monday. My follow up to discuss all results from labs/imaging is this Thursday. However, over the last couple of weeks the pain in my left leg from knee down has become worse and is near constant. It feels like the most intense ache and if laying down or sitting, it hurts for anything to touch it, like touching the couch or bed with it. It just throbs and aches to the bone it feels like. I’m also having cramps off and on in the whole leg. Should this be concerning?

 

[Nikki J]

It doesn’t sound like any ALS I know. Pain like that is not a presenting symptom. Cramps are incredibly non specific

 

[hollyhawk25]

The cramps are like mild Charlie horses but in strange spots, not just in my calf. I’m getting them in the side of my knee, my quad, my thigh and my hamstring. I’ve never really had those there before. They happen at rest and not just when using the muscle. Like contractions that last for maybe 15-30 seconds.