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What do you think was the biggest reason your diagnosis was delayed?
Many of our forum members have shared that it took a long time to finally receive confirmation of their ALS. Months for some, years for others. Was it because your doctors weren’t aware of what ALS symptoms looked like? Or because there are no definitive tests for ALS? Maybe you were hesitant to take your initial symptoms seriously. Or was it something else?
What do you think was the biggest reason your diagnosis was delayed?
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10 Replies
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I was fortunate not to have a delay time between testing for and receiving a diagnosis. Although I’ll admit I lived with the symptoms for months thinking they would go away. Maybe I was part of the delay?
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Subjective, subjective, subjective tests and assessments. Neurologists don’t trust what other neurologists do or say.
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I was eleven minutes late to my first neurologist appointment vs his strict ten minutes late, cancelation policy, tto an eight am appointment and got rescheduled two months later
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My progression is slow. I had my 1st of 8 EMGs in 07/2015. My next two EMGs were in 2017. I went from an AFO to an KAFO before the VA gave up looking, so I went to a non-VA neuromuscular specialist. It took 2 more years before I got my 1st diagnosis in Oct 2019. Then the VA finally recognized my condition in May 2021 (2nd confirmation).
I think one of the barriers was that the providers I had were clueless about ALS and did not know how to connect the dots. I was misdiagnosed 4 times before 2021.
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I think the biggest delay was due to two factors.
1-Getting the cost for MRI testing on my insurance. In the end, they said $6,000-$21,000 out of pocket. They could not narrow it down due to having 4 test. I had to drop that insurance and secure a more agreeable cost.
2-Having respiratory onset ALS confused even specialist.
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In 6 months I went from no motor problems to not being able to walk. I fell 13 times. Even after EMG, the neuromuscular specialist told me, “We don’t know what you have, there’s nothing we can do for you, come back in 6 months.” I was shocked and desperate; I wrote to the chief of neurology insisting they send me out of network. Miraculously, they sent me to an ALS clinic and I was diagnosed immediately. My progression is still fast. I’m angry and wonder if it would have been slowed by the meds if diagnosed earlier.
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My husband, retired military, had ALS and died May, 2021. We thought he had symptoms back in early 2017. He started going to a civilian Neurologist who had no idea of what was going on. He had back problems for years and went to a Neurosurgeon (Sep 2018) who was sharp, head of Neurosurgery at a large hospital and told us the picture didn’t fit just back problems. He told us if my husband was his brother he would say he was starting into ALS. Told Neurologist this and she said “no way” and ordered more tests. His ALS started with Bulbar ALS so he was sent to a speech therapist which didn’t do much. We had a 2nd home in SW Florida and went there and went to another Neurologist. This Neurologist also would not diagnose ALS and said we needed to go to Academia to get an answer. He suggested Univ of Miami as they had an ALS clinic. My husband didn’t want to go there and just continued to see the Neurologist who wouldn’t tell us anything definitive. Meanwhile, he was in a wheelchair most of the time with definitive speech problems. He finally set up an appointment in Sep, 2019 at Univ of Miami where he was immediately diagnosed. This was all in the civilian spector. He then went to the VA hospital in Tampa where they confirmed his diagnosis. Since 50% of the people with ALS are military related we should have gone there first, in retrospect. But, he was not in favor of being treated in the military system so that was put off which was a mistake. If anyone, military related has any hint of ALS they should go to the nearest military medical facility. The Tampa ALS clinic took marvelous care of my husband to the end even though we lived over 2 hrs away. They can provide support medical personnel from the area or that come down 2 hrs away. They provided any equipment he needed and partial care with an aide since he stayed at home. The Tampa ALS clinic was marvelous until the end. I just don’t think many people along the way that he saw knew anything about ALS, except the Neurosurgeon he saw in 2018. Then others blew off the idea of ALS. No one wants to tell someone they have a terminal disease including his Neurologists. But, they will tell you if you have cancer…why not if you have ALS.
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It took years maybe decades. Looking back I’ve had symptoms back to a fall down our steep rickety basement stairs at about age 2. For the next 30 years I had spells of teleopsia (Alice in Wonderland syndrome). I quit telling anyone about them- they were quite pleasant. They morphed into a chronically swollen left leg at age 35; for that I saw many doctors except no neurologists. In 2000 I had my first radial kerototomies (I have since learned these are contraindicated with autoimmune disorders; I have psoriasis). In 2017, after 2nd radial kerototomies I started falling. After 20 falls I saw my primary doctor and after MRIs etc she hammered my right knee again and asked ‘how did I miss that?’ And referred me to a neurologist. That was a 6 month wait; because we spent the winter at a resort in Mexico. I had taken 75 falls by November 2018; never broke a bone. I have been to 3 neurological practices; they all say I’ve had this for a very long time, and that I am ‘very tough’. A neurologist at Mayo Minnesota shaking his head asked ‘how did doctors miss this all your life? ‘ . I didn’t tell him I had a physical at Mayo in 2015; so they missed it. I was officially diagnosed with ALS May of 2021, 66 years after my first symptoms. Nobody has named the type of onset I have. I am radically grateful that I spent most of those decades totally ignorant about ALS. I have little use for doctors; put myself on hospice almost 18 months ago and I am very much at peace with my life. Thank you for asking
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In my simple mind I was both fortunate and unfortunate if that makes sense.
It was Dec of 1996 when I realized I couldn’t open the scissors I was using. My Dr referred me to a local neurologist. Within weeks and after a few test he said he didn’t know. On to the next Dr. He said I had a very unusual condition that was more common in young Asian males. I was 42 and of Sicilian descent. Next Dr. said motor neuron disease. So it was 5 months. I sought another opinion.
This time to a Dr who was the head of neurology at U of A on Tucson. Great great Dr. He told me sometime he didn’t like to say to any patient “I don’t know”.
I didn’t have the heart to tell him that I already had an appointment at the ALS clinic in San Francisco. So we are off to I think it was my 5th Neurologist. It’s now June of 1997.
They confirmed Motor Neuron Disease. Guess they didn’t like saying ALS or Lou Gehrig Disease. I started on Rilutek as well as a bunch of other pills 53 daily. I continue there going every 4 months. I was on my 5th set of EMG & never conduction study. Back then they had to order both test. MRIs of the same amount. Muscle biopsy I suggested to get. Treatment with IVIGs, 2 times years apart. I was open to any test anywhere. Lumbar puncture 17 now.
10 years going there every 4 months. I knew it was important to stay with one Dr but I also knew the typical path this disease normally takes. I wasn’t normal so I continued to search. I continued to search for other Drs, looking for any help. The world wide web was one of my favorite search tools. I also went to medical libraries.
So here I am on my 14th neurologist in 28 years. My symptoms continue to progress slowly But I must say it seams that this past year its progressed at its fastest rate.
Keep a positive mind and never give up. Remember Drs are humans too. They make mistakes, they say they “practice medicine” because they do, think about that.
I’m still reading everything I can, looking for any trial study I can attend and any medicine that may offer help.
Please be safe and remember every day is a holiday.
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It took over a year to get diagnosed. I started with my PCP and she quickly determined I needed a neurologist which at that point things slowed down. It took me 5 months plus to get in and after I did, they couldn’t decide what I had. Eventually, one of my neurologists said this was taking too long to get answers and referred me to Mayo’s. It took 5 months more to get in at Mayo’s but after that only a week to get my diagnosis. I had symptoms for nearly 3 years before my diagnosis but at first I just thought it was old age catching up with me as back then when they first appeared I thought it was old age. So in summary, I waited 1.5 years before I went to any doctor and then due to lack of neurologist availability it took almost another 1.5 years to get a diagnosis.
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