Neuromuscular Testing and Waiting for ALS confirmation

QUESTION: Has anyone else had so much trouble getting diagnosed with ALS or SOME explanation for symptoms? I have started attending clinic visits with Neurologist 4 (diagnosis dr), and now having symptoms in my left leg.

Good evening!
Since January of 2025, I have been seeking help for the lack of strength and use of my left arm between my elbow down to my wrist.
Neurologist 1: My first EMG, Doctor had no clue, sent me to PT
Neurologist 2: You have ALS, go to appointment 11 months from now. They called to reschedule and ask me why doctor did not send them my records. I called asking for my records to be sent, no return call, nothing done. This neurologist did an EMG on me himself and it was the most rough EMG I have had. Blood and bruises everywhere.
Neurologist 3: No sure, ran tons of tests, partnered with EMG doctors in office, then the doctor and the EMG doctor met immediately with their supervisor who wants to see me in a week (Dr. W).
Neurologist 4 (Dr. W): Met with me to do physical exam, review EMG, and to send me for a muscle biopsy. When biopsy results came back from Mayo Clinic, met with me immediately to discuss test results. Something on the diagnosis from the results page indicated ALS. Doctor said he encourages a 2nd opinion, I request the best. He said you will see him next week (this was on May 26, 2026), but poor communication at the second opinion doctor's location was extremely poor. The day before my appointment on 08/04/2026 his office calls and says, "He's a bit under the weather and cannot meet with you." I asked when can I meet with him. Their response: "We are booked!" Finally got her to schedule me for the next 08/05/2026 with new doctor to the practice, hired by "best doctor ever for second opinion," swears its not ALS, wants to start tests over, one test per month. Poor communication. Was ready to go to my Brain MRI at that doctor's hospital, but found out when I called them the appointment had been cancelled because as they said, "the woman doctor who you have been seeing said it was an accident that it got assigned." I have never seen a woman doctor for ALS anywhere.

Bewildered, feeling like if this IS ALS, I am not going to use my good days WAITING ON THEM. Called Mayo Clinic in Rochester, accepted the next day for an appointment week in October. Sending them all my records now.

QUESTION: Has anyone else had so much trouble getting diagnosed with ALS or SOME explanation for symptoms? I have started attending clinic visits with Neurologist 4 (diagnosis dr), and now having symptoms in my left leg.

If so, please share with me how you finally got to the correct diagnosis?

Thank you!

Laura

I had severe fasciculations and was worried about ALS. My PCP and neurologist ran numerous tests to rule out other causes prior to scheduling a 4 limb EMG. The EMG is supposedly the only test that is definitive. Fortunately, it was negative and I was diagnosed with BFS. The whole process took less than 6 months.

The main thing to watch for is muscle weakness. This is a hallmark of ALS.

I can't believe the carousel of doctors that you have had. Based on how long your journey has been I doubt that you have ALS. By now I would expect that you would have had substantial degradation. ALS is not very forgiving and tends to progress more rapidly than your experience.

What symptoms do you have that concern you?