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How long did it take for an ALS diagnoses?
Did you know that it takes many pALS 12 months or longer to get an official diagnoses of ALS? According to the article in ALS News Today, https://alsnewstoday.com/2020/07/10/diagnostic-delay-als-large-need-not-be-study-says/ of general practitioners were more knowledgeable about the signs of ALS onset then many pALS would likely be diagnosed sooner. Earlier diagnoses could benefit pALS and help the better prepare and treat ALS.
How long did it take you or your loved one to get an ALS diagnoses? What obstacles did you encounter? Was your general practitioner knowledgeable?
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8 Replies
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In my case it took just over 12 months. I am 69 years old, the diagnosis was in June 2017: first symptoms appeared in early 2016, two falls, difficulty in lifting weights, pain in the lower back, general loss of strength in the muscles. Visits with general practitioner, MRI twice with back pain specialist, sessions with chiropractor and finally visit with neurologist followed by EMG and subsequent ALS diagnosis in June2017.
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Good afternoon all,
In May 2019, I began experiencing tingling in my left arm, hand and some on the left side of my face/head. In June 2019, I developed an intermittent left eyelid twitch. In July 2019, I started having weakness and tightness in the back of my legs. In August 2019, I developed random twitching (fasciculations) along with increasing tingling and numbness in my extremities and other random spots. Since then, all these symptoms have gradually progressed and worsened. I’ve had 4 EMGs (latest in June 2020), countless blood tests and seen many neurologists and other specialists. I’ve been told I don’t have ALS by every doc but no one knows what is wrong with me. I am convinced I have ALS but without a dx, I haven’t received any treatment. I’m slowly getting worse and need answers ASAP. Does anyone have any info that could be helpful? My wife and 3 young children are also dealing with this along my side and it’s so hard to live like this. Any info or suggestions would be greatly appreciated. Thank you and God Bless everyone and their loved ones!!!
-John-
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Hi,
Well, the diagnosis of motor neuron disease came fairly quickly…. a month after we initially went to our internist with concerns in October 2019. Looking back the my husband ‘s symptoms probably started about 6 months before we went. Then it got a bit more complicated bc the first neurologist (November 2019) said ALS and sent us to see experts in NYC. The first specialist said early ALS or PMA. The second specialist ran all the test again plus additional tests and said ( February 2020) it is motor neuron disease but not classic ALS and was hesitant to give a specific name. We haven’t been back due to Covid-19 but we have an appt on the 27th. I guess some cases are harder to classify? I understand that in Britain they don’t use the term ALS… just use the term motor neuron disease.
At any rate, that is our diagnosis story/timeline.
Giselle 🙂 -
To add to my previous post: my muscle weakness and twitching are now widespread throughout my entire body. I also have muscle cramping, tightness and pain. I have worsening jaw and neck pain which feels like nerve pain. Recently, I have experienced neuropathic itch when I get moments of bad nerve pain in my arms, hands, legs, feet, face, etc. My nerves are definitely involved but my weakness is my worst symptom. Thanks again everyone.
-John-
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Hi John, Sorry you are dealing with this! Do you live near NYC or a city with a good ALS clinic?
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I have seen neurologists at NYU and Columbia in addition to several local neurologists here in NJ. They all said no ALS. One said possible fibromyalgia. One said possible small fiber neuropathy. One said possible unspecified autoimmune disease. Several guesses but nothing concrete. Awaiting a spinal tap to gather more info. I’m losing hope day by day.
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John, ALS often comes about slowly initially, like a finger or hand or foot or leg, unlike what you describe.
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I experienced a number of symptoms (loss of strength, falls, lack of coordination and stamina, etc.) for about a year and was uncertain whether it was part of the aging process (early 70’s) or something more. My primary MD referred me to a local neurologist who tested me and suggested I go to a medical center since he said it was a serious neurological issue. I went to Univ. of Chicago, Mayo and Northwestern Memorial before I received a definitive ALS diagnosis … total time about 3 years. On the journey, I learned there are no definitive ‘markers’ , so it becomes a process of elimination and observation over time. I respect and applaud the diligence of the medical community, but the lengthy period of uncertainty sure works a hardship on the patient and his/her family!
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John, I’m so sorry your journey to be diagnosed has been so difficult. Being that I just moved to PA from NJ, 2 years ago, I had initially thought I might be heading into NYC to one of the big hospitals there. My struggles began with a few falls starting last February, and gradual weakening in my legs, arms and feet. I had other symptoms, apparently unrelated to ALS, but I still was feeling worse, as time went on. I then was admitted to my local hospital in Doylestown, and even with 3 weeks there, and every possible test done, and evaluations by multiple specialists, no one had answers as to what was causing my symptoms. I was then transferred to Penn Hospital and spent 3 weeks there too……more neurologists, plus every specialist they could send to look at me, and no diagnosis. It was thought I might have Parkinsons, or another movement disorder, but that was ruled out. I was discharged to a Rehab in NJ, spent 3 weeks there, and was then sent home, still not knowing what was wrong. I had lots of therapy, and was 100% dependent on a walker, with a great deal of weakness mostly in my legs, and feet, peripheral neuropathy, and minor weakness in my arms. It was then suggested I see a Neuro-Muscular Neurologist. I knew Jefferson Hospital in Philly was known for their work in Neurology, so that was to be my 3rd hospital, in hopes of a diagnosis. Mayo Clinic was my next choice. I actually had a therapist, nurse, and a doctor say to me……”Don’t worry, you don’t have ALS, that would be the worst thing you could have!” Well, I was more than ready for figuring this out, and an excellent neurologist at Jefferson was the one who did my 3rd EMG, and said she was positive I had ALS. She spoke to her colleague, who is a Neurologist, specializing in ALS, and who heads up the Clinic there. I had my first appointment in November at the ALS clinic. This neurologist, as well as each person on the Team that I saw that day, felt certain that ALS was what had begun, last February. I can’t say enough good things about this Team, as when I left Jefferson that day, I felt I was in the best of hands. Sure, I’m not thrilled about what this all means, to have a disease with no cure, but at least I know what I have, and I can do all that is possible, to deal with my life struggles, each moment at a time. I’d recommend Jefferson to anyone. They are the most compassionate people I have ever seen. Good luck to you John, I sure hope you can find answers soon.
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