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?

@laurafrasher My name is Ellen, I was diagnosed with ALS 12 months ago, but I had some symptoms for at least six months before diagnosis. I went from doctor to doctor, test to test, but no-one could tell me what was wrong. It is very common for ALS to be misdiagnosed/ undiagnosed for a long time. There is no test for ALS, diagnosis is by a process of eliminating other possibilities. Finally it was a Diagnostician (a GP who specializes in diagnosis) who red-flagged me for ALS. I had a nerve study done (various parts of the body are stimulated electrically to investigate nerve functioning - it is completely painless, but has to be done by a specialist). My results were clearly abnormal, and a neurologist was consulted and confirmed the diagnosis. I would ask to be referred to a neurologist who could conduct a nerve test. If it is ALS, there is no cure, but there are medications you can take to slow down the progresion, and it is worth getting onto them as soon as possible. You have to be assertive with your doctor(s) - make a lot of noise, and INSIST on being taken seriously. Also, google your ALS Association in America or Canada (I live in Australia) and ask them for information. By the way, I have been living with ALS for 12 months, and am still able to live an independent life (with a mobility wheeler), so get the diagnosis confirmed, then take all the support and assistance you can get. very case of ALS is different, but you have to advocate for yourself and make sure you have a trusted medical support team around you when needed. @llu

@laurafrasher Yes, I had a long journey getting a diagnosis. I went to 2 different well respected medical teaching universities in California for services. I always believed in having a second opinion. I was diagnosed with ALS after 2 years of searching for what was causing my symptoms (of course long waits for appointments). It was the EMG test that confirmed it at one of the teaching medical universities by my neurologist MD there and 2 MD Fellows. My family was devastated by the ALS diagnosis. I had another very experienced private practice neurologist MD I was seeing at the same time as the others who doubted the ALS diagnosis but said it was possible combined with another neurological disease because my symptoms were not totally consistent with just ALS. I got accepted to Mayo MN. They conducted another EMG and said I DID NOT HAVE ALS. Further testing at Mayo MN confirmed by MRIs and a lumbar puncture verified I had Multiple Sclerosis (SPMS) and a subsequent Mayo MN visit confirmed Afferent Baroreflex Failure. Great services at Mayo MN go if you can you’ll get answers.

Mayo is the best!