Fasciculations, Hyperreflexia, and Possible Weakness

[danbiochem]

Hello everyone, first of all I greatly appreciate the opportunity to post in this forum. I'm a 19-year-old male, and my symptoms began in late May when I was taking a vacation after my college semester. It began with the weird feeling in my eye followed by twitching of my left eyelid. I initially thought nothing of it, as I experienced a similar event in the past when I got no sleep, but a few days later, the twitching was present everywhere in my body, lasting for up to a few seconds at a time and appearing in random places throughout the body. I still simply brushed this off as a vitamin deficiency or lingering stress from final exams, but the twitching persisted, happening anywhere from a dozen to over hundred times a day. Interestingly, the eye twitching stopped, but the twitching would still be present in my arms, shoulders, legs, chest (later), back (later), and abdomen (later) for the next 2.5 months as of the time of this writing. Anxiety seemed to intensify the frequency, but I wasn't anxious before the symptoms and there were times I wasn't even thinking about it, yet the twitching still persisted.

I thought this could be BFS triggered by something, but all of the blood tests, thyroid tests, and cortisol exams came back completely normal (2 times). My PCP referred me to a neurologist, who noted that I had hyperreflexia in the lower right extremity. I assume strength tests were normal, as she didn't say anything about it. She instead suggested I could have some form of myelopathy and ordered two MRIs of cervical and thoracic spine, both of which came back clean. At this point, I haven't heard anything back from my neurologist, and I'm still left with no diagnosis after two months of experiencing symptoms.

I also from time to time experience warmth in my left foot and the occasional tingling in various places throughout my body, but the fasciculations dominate my day to day life. Recently, I've noticed that I have a flatter, slightly dented thenar muscle in my right hand compared to my left, though I am left handed. I also started to experienced a sensation of fatigue in my left shoulder and arm, which is weird because my left side is typically much stronger due to playing sports left handed. As for excessive exercise as a possible cause, I actually haven't done any strenuous exercise in quite a while, maybe a year. I'm beginning to get worried if this is ALS, especially with all tests so far coming back normal, and I have no idea when/if I'll ever get an EMG. Could it be possible to have ALS with the type of symptoms I'm experiencing, as I've read that BFS doesn't normally present with UMN signs such as hyperreflexia? Has anyone diagnosed with ALS had a similar presentation of symptoms?

Thank you in advance for any insight/advice you may have. I have no idea what it's like to be going through a horrific disease, and I appreciate those taking the time to help others. I'm currently assisting in research focusing on the mechanism of muscle wasting in diseases like advanced cancer, which could one day be applied to fighting MND.

 

[lgelb]

BFS doesn't need a trigger (or at least not one that we can appreciate), so your negative tests only increase the likelihood that's what you have. However, you have identified anxiety as at least an exacerbating factor, which, again, is common in BFS simply because what we focus on, tends to manifest itself.

Nor do I understand why you would jump from negative tests to ALS.

Isolated hyperreflexia, which can wax and wane (it might not show on your next exam), is not any kind of red flag in itself.

If it will take an EMG to reassure you, you are free to ask your neurologist to order one, but even ahead of that, it sounds like you should have a conversation, even via portal, about the differential and the plan.

Best,
Laurie

 

[danbiochem]

Thank you so much for a prompt response! I guess I started to think ALS as soon as I experienced a little bit of asymmetrical muscle fatigue. Wish you the best!

-Daniel

 

[danbiochem]

I had one more question pertaining to the widespread fasciculations all over my body. I read several research articles claiming that hyper-excitability in one area combined with widespread twitching could be an early sign of "reinnervation" that could precede the classic ALS symptoms (when there is finally denervation). If this is in fact the case, at what point can I confidently believe that I don't have ALS and rather have BFS? Two months? Five years? etc.
I know that writing about this implies an underlying anxiety I have, but in fact, there were periods of time where I didn't care about my twitching at all (around the first few weeks), but just the prolongation of the symptoms gave me more anxiety rather than the other way around. Thank you in advance for any insight/thoughts.

 

[lgelb]

The number/locations/temporal patterns of twitching sites you identify points away from ALS from day 1. So you can believe it now. Confidently. Completely. And move on with your healthy life, perhaps taking note as to the exercise, food, sleep, stress and hydration that correlate with the twitching so you can experience less of it.

All the best.

 

[danbiochem]

Ok, noted. Thanks!