muscle weakness, twitching, cramping and fatigue... ALS?

[jaine80]

Hi Everyone,

I am wondering if any of this sounds familiar.. 38 y/o female. Previously VERY active, trail running, mountain biking, more energy than I knew what to do with. Weekends, you could find me hiking (10+ hours, overnight hikes with a full pack), alpine mountain biking (4+ hours), and back country skiing.

My symptoms started in 2018: Tinnitus (low frequency hum in my ears) and just feeling "off" ... slightly off balance and like there was a lot of electricity in my body if that makes sense.... reaching for my cell phone in my pocket because I thought I could feel it vibrating, but it wasnt... <inaccurate scientific statements removed>

Then, 6 weeks ago, I experienced a rapid onset of neurological symptoms which left me feeling like someone had literally pulled the rug out from underneath my life:
- muscle weakness, bilaterally, feet, legs, arms, I could almost "feel" the nerves dying: L5-S1, and C7-T1 were affected first.
- fatigue. Oh, the fatigue! I am in bed/resting most of the day.
- muscle twitching. Started in my left arm. I can still use that arm but it feels weaker than the other. Now, twitches are everywhere, and often. Sometimes they twitch while I am standing, and I am afraid I will fall over. And when my left arm twitches while I am holding something heavy, I am afraid I will drop it.
- Difficulty swallowing, speaking has become slow and laboured. Trouble with "s" and "l". I am not slurring, but only because I talk very slowly and carefully. Feels like my tongue is too big for my mouth.
- stiff jaw. jaw cramps. it tires so fast, when I talk too much, smile too much, even eating.
- forearms cramp so easily. It causes my fingers to get slow and weak. Typing (particularly with my last 2 fingers on both hands) and driving (handling steering wheel, using turn signals) is difficult.

Tests:
- routine blood work has all been normal. protein electropheresis, MuSK, CRP, CK all normal
- MRI of brain, IACs and spine all normal
- had a neuro exam 3 weeks into the neuro symptoms. EMG was "pristine," according to the neurologist, nerve conduction study was normal, all reflexes were normal except jaw jerk which was a 2, so slightly brisk but not pathalogically so.
- clinical exam was normal, all strength tests were easy.

Concerns:
- Most of my symptoms are UMN, except the twitching, but honestly what is the difference between fasiculations (LMN) and clonus (UMN)???
- I had the neuro exam only 3 weeks into my symptoms. I'm an athlete. Not a couch potato so my baseline doesn't leave me winded after climbing a flight of stairs, so I don't have an issue getting up from a chair or balancing on one foot! Too early??
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[lgelb]

We take EMG results in an individual context, as everyone should. Exams, history, symptoms...they all matter.

There are many other reasons for UMN damage, if you have it, besides ALS. When you talk about feeling your nerves dying, it's evident that you're pretty amped up, but we see many people here in that state, and very few should even be thinking about ALS.

The rapid onset and constellation of symptoms you describe, in concert with a clean EMG and normal exam, suggests that ALS is not what you have. As always, we wish you well and will be interested in learning what comes next.

I understand that you are upset, but everyone here is dealing with the reality or fear of ALS. Please find a friend, relative or health professional with whom you can express yourself emotionally, which can only help you, and don't post here again until you can report any further medical results.

Best,
Laurie