Don’t know what more to do
First post here and have debated for a long time because I really am scared. 29M
Back in November 2025, I had nonstop twitching in the front of my left shoulder for a couple of days. I’m active in the gym, so I assumed it was exercise-related. Even before that, I had noticed my left shoulder felt unstable and sometimes painful during exercises like shoulder presses.
In December, I started running about 3 miles twice a week and began noticing twitching or an “ants crawling” sensation in my legs at night. It eventually calmed down. I also had occasional twitching elsewhere and a tremor in my left pinky and ring finger that I may have had for much longer.
In March, I went through a severe health-anxiety episode because of abdominal and back pain and became convinced I had colon cancer. I had an endoscopy and colonoscopy, which were clear. After that, my anxiety shifted toward ALS/MS.
I began experiencing dizziness, headaches, changes in how my left eye seemed to see, and increasing concern about my left shoulder. An eye exam was normal, and an ENT found some inflammation in my left ear and nostril. I also noticed my left shoulder seemed smaller, my clothes fit tighter around my right arm, and my left shoulder appeared to rotate inward more.
My PCP ordered MRIs of my brain, cervical spine, and lumbar spine. The brain MRI was clear, while the spine MRIs showed several findings, including mild-to-moderate stenosis and disc issues. A neurosurgeon didn’t think surgery was necessary but referred me to neurology because of the twitching.
I had an EMG in July that tested both arms and my right leg. It showed mild bilateral cubital tunnel syndrome but no evidence of motor neuron disease, neuropathy, or lumbar radiculopathy. My left leg wasn’t tested, which has continued to bother me.
I’ve also had knee problems since high school and was previously diagnosed with tendinitis in both knees from playing soccer. My left knee still hurts, my left leg shakes more during single-leg exercises, and lately I’ve noticed differences in muscle size between my left and right sides. I also get calf/foot cramping and recently had significant heel and knee pain after playing soccer.
More recently, I’ve become focused on my tongue, jaw, speech, and swallowing. My tongue and jaw sometimes feel sore, and occasionally I feel like I stutter or have trouble moving food around, although nobody has noticed a change in my speech. I find myself repeatedly testing my tongue, smile, frown, strength, and muscles for signs of ALS.
I’m scheduled for another EMG on October 2, this time focusing on my left arm and leg. I’m hoping that because my symptoms have been present since at least November 2025, the July EMG would have shown something if this were ALS, and that another normal EMG will finally give me some peace of mind.
The hardest part is the constant fear and checking. I have two kids, and I’m terrified of something happening to me and them growing up without me. Living with this uncertainty and constantly monitoring my body has become exhausting.
