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I’m so Frustrated!! What about You?
“ALS is frustratingly difficult to diagnose. Consider these ALS misdiagnosis statistics: In about 10% to 15% of the cases, patients initially diagnosed with ALS actually have another disease or condition instead (false positive). Nearly 40% of people with ALS initially receive a false negative.”
Not only is ALS difficult to diagnose, but oftentimes it takes well over a year and repeated tests.
What do you think should be done to improve the accuracy of diagnosing diseases such as ALS? What would you like to see change in the medical field in order to improve care?
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8 Replies
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Do not provide a diagnosis of ALS if you are not 100% sure.
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Amanda. I am a SUPER ADVOCATE FOR MYSELF or also known as the follow up King. I have all my tests, labs, clinical notes, scans, referrals and anything else on my phone. I can fax, email, text or print all of these when I am at a provider’a office or on the road. I have found depending on the office to do these things, seriously delays my care. As far as the medical community, what I’ve found is that ALS is a non-qualified physician’s kryptonite. I understand. Liability alone in this world is scary to anyone. All but one of the providers that I saw said, “I don’t think you have ALS.” Good luck to you. Great topic!
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The slow and difficult definitive diagnosis of ALS is the reason there are studies always looking for biomarkers of ALS. Especially with slow progression ALS , the early symptoms can be other MNDs.
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Here’s my short answer: 1) it starts in medical school—ALL students pre-med & beyond need to gain knowledge & exposure to the neurodegenerative disorders. Those specializing in neurology should be MUCH more tuned into these disease processes. 2) there needs to be INCREASED collaboration among ALL disciplines of medicine—from PCP’s all the way to the top researchers! 3) ALS Clinics need to be much more funded and available to the needed patient population…TIME is of the utmost importance in ALS, as is the connection to coordinated services. For sure not easy, but it is time for ALS to come out of the shadow of ‘so sad, too bad’ complacency…way too many individuals have been lost & families devastated by this under-funded disease since 1939, when it was simply re-named after a sports figure was diagnosed and ALS ended his stellar career. History of that has been repeated for EVERY individual diagnosed since that year.
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In my case the issue was time wasted getting to the neurologist, who was very competent by the way. In my opinion the way to a quick, quality diagnosis should flow rapidly from the general practitioner (GP) to the neurologist without the GP fooling around with MRI’s, blood tests, etc. If a patient presents with possible neurological issues, e.g., foot drop, leg weakness, etc., accompanied by zero pain an immediate referral to a neurologist is in order. Personally, traveling this route would have knocked ~7-months off my diagnosis timeline.
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In addition to what everyone else has said, this really needs to be emphasized to allergists. For years I was seeing an allergist and taking all sorts of medicine for it with little to no result. After being diagnosed with ALS, I let my allergist know and he said thinking out loud, “no wonder your lungs sounded clear”
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Trust me I get frustration! But, a shout out to the specialists that do think outside the box. My dermatologist thought I may have discoid lupus(skin condition). He ordered a Rheumatological panel and bam. I’m off to Rheumatology. They found inflammation but very random, nothing definitive. My Rheumatologist PA, another very caring and intelligent provider, recognized that I had many neurological symptoms. Fast forward to today. I have a consultation with the director of my local ALS clinic. With these two wonderful providers in mind, I am a retired hospice nurse and have known that ALS is what I was presenting with. I learned to read my EMG, muscle biopsy, labs that correlate often with ALS, MRI’s and obviously how I feel. Shout out to the ones that listen and the ones that care, though, you have to find them first. Be your best advocate!!! Don’t let a provider tell you what they think is happening in your body. Be vigilant! Time, unfortunately, is not on our side. God is however.
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I dunno. I thought I had some sort of lingering, post-COVID effect when I started stumbling on certain words about 18 months ago. But then an ENT doc suspected that I might have MS. Humph! I sloughed off that idea! But then it got worse! So I tried a neurologist, who promptly recommended my getting an EMG. Bingo! ALS strongly suspected, even though I was 80 years old at the time! Sent to another neurologist who specialized in ALS diagnosis. Another EMG. Yep, for sure, it’s ALS. But being old, I guess I’m fortunate, in that, it’s a lot better than being hit with ALS at a younger age! Now I have a good reason to take it easy. But I can feel for the folks who are younger and get the same news. I’d be really frustrated too.
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