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Need advise
Ok my neurologist said 4 months ago he is pretty sure I have ALS. Wanted another EMG to verify. I could not afford the deductible when they called to schedule so we didn’t get one. Went back to neurologist today. He looked at my hands for clawing I have none. Had me press my tongue against his hand thru my cheek and said. He didn’t have ALS on his radar now and i need to see a surgeon for stenosis in my neck which the radiologist said was only mild. Have I lost my mind or is this normal
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14 Replies
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Do you have fasciculations?
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Yes I do.
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I also forgot to add he said I wasn’t progressing fast enough.
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Bad news, the fasciculations…
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You are not losing your mind! Unfortunately I believe this to be all too common. ALS is somewhat tricky to diagnose and seems to be reached when all other conditions have been ruled out.
I am sorry insurance would not cover additional EMG ( I had 3 before final determination was reached)
Best of luck to you and be your own best advocate, fight for the testing you need. If nothing else, perhaps new benefit year will allow for more testing.
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You are not out of your mind. My husband presented with spinal stenosis and that is what the neurologist thought was causing his upper limb weakness—mostly right arm. My husband had the surgery May 2018 and function was improved the next day. After a year of intense physical therapy to increase strength in his arms we believe he came to a point where the therapy and his condition did not improve and the upper limb weakness, while dramatically improved, just didn’t get better. On a very long drive in traffic (a year later to the day-May 2019, and ~5 hours) when we arrived Jay’s arms were just wrecked. Holding them up for that long holding the steering wheel was too much. Things were different after that. He could not hold or carry a plate of food at the wedding and did eventually “recover” from that event, but we knew something was different. Over the next several months we did see his spine surgeon again and then our local neurologist who suggested we see the neurologist team at UCSF, which is an ALS Center of Excellence. There we saw another neurologist ( Dr. P) who completed a full neuro-exam, ordered a full body EMG, and a battery of blood tests covering everything from genetic mutations for ALS, autoimmune diseases, heavy metal accumulation, and blood panels that we didn’t know existed (18 vials of blood) My point is that my husband was tested for everything Dr. P could think of. “Everything” was ruled out and the full body EMG pointed to sporadic ALS—devastating news in Jan 2020. Sporadic ALS occurs in 90% of pALS and has no known cause. Genetically caused ALS occurs in ~10% of pALS. My husband was very functional i.e. walking without any assistance, talking, eating, hiking, breathing normally and was able to dress, shower and take care of himself. We made accommodations as needed e.g. putting milk in a small container so he could make his own coffee, etc. Here’s the IMPORTANT part of the story—Dr. P told us that spinal stenosis and ALS can exist at the same time in a patient. At first a patient may appear to have improved function, but at some point the neurodegeneration brought on by ALS “takes over”. I encourage you to read this very recent study and discuss with your neurologist https://pmc.ncbi.nlm.nih.gov/articles/PMC10836407/. If your neurologist is not part of an ALS Center of Excellence I suggest getting a referral from your neurologist to a neurologist at a Center. Don’t know where you are, but here is a searchable link to find one in your area: https://www.als.org/support/certified-centers-clinics That EMG that you wanted to have and additional blood, genetic, and biomarker testing to confirm/rule out ALS are, in my humble opinion, critical to an accurate diagnosis and your peace of mind and may help forge a path forward. It is common knowledge among pALS and their treating medical teams that it may take up to a year to get a “definitive ALS diagnosis”. Receiving treatment early is important. I also suspect that neurologists are reluctant to point to ALS which at this point is a clinical diagnosis. You may be interested in this Expert Talk Series from Everything ALS (You Tube; Oct 16 2024) which featured discussion with Dr. Michael Benatar (University of Miami) about the Miami Framework for ALS and Related Neurodegenerative Disorders—it is very well done—ask your neurologist if he/she knows about this: https://www.youtube.com/watch?v=X-3Ze5rdipU
All that said, my husband’s ALS was designated very slow progressing. He participated in clinical trials, eventually retired from a robust law practice to focus on his health and quality of life. He was “on track to live” with ALS for several more years. He passed away this year in April—but not from ALS complications per se. He had been having digestion issues which are common to ALS or so we thought. Our instincts to ask questions and investigate further, and the support of Dr. P and the UCSF team, led us to a diagnosis of esophageal cancer which caused my husband’s rapid decline over 3 months.
I mention all this because this disease can sometimes look like something else at least initially. Your persistence, curiosity, resilience and advocacy are your allies as they were ours despite the outcome. There are resources available to help you and there are neurologists for whom ALS is their specialty. I wish you a mountain of hope and rivers of peace in the days and months ahead.
pmc.ncbi.nlm.nih.gov
Background: Spinal stenosis and amyotrophic lateral sclerosis (ALS) can co-occur and both manifest as signs of dysfunction of lower and/or upper motor neurons. Few studies have identified factors that alert the diagnosis of ALS in patients with ...
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Thank you both so much. I told my wife last night I have all but given up hope of getting anywhere. I am usually an upbeat person but not so much these days. I read his notes on my visit and they are full of untrue things. He checked my reflexes but did so with my shoes on and me feet flat on the floor. But in notes he said I have normal reflexes. I have a severe cough he did not address but in notes he said he did. I have severe lower back pain ( something new) no mention in notes all he spoke of was my refusal to have surgery
Seeing my GP Tuesday hopefully he has some guidance
Again thanks for listening to me whine
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Reading this makes me kinda crazy. Especially the notes which may not be thorough enough. If you can, write down your version of the sequence of events–that way you don’t have to remeber dates and events and doctor visits i.e. keep your own records and get the records from your neurologist–get everything including test results, images, etc. Before we went to the new neurologist Dr. P, whi I mentioned before, we provided a binder with all hardcopies and scanned documents electronically. Then use these to inform your GP and also a second opinion from another neurologist. If you are in Massachusetts please get in touch with the ALS Center at Mass General. Sending energy your way.
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Can you report his inaccurate notes to someone? Medical board? That is really disturbing. Sounds like he is trying to cover his backside.
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Had been diagnosed with stenosis in ’16 and had was getting injections for radiculopathy discomfort. Early summer of ’20 developed foot drop and by late summer my lower legs were so weak my ankles would roll and I would fall walking on uneven surfaces. Saw a neurologist for EMG who recommended spine surgeon & 10/20 had lumbar fusion. Radiculopathy went away, but not foot drop/leg weakness. Saw another neurologist(at University) who sent me to another (their ALS specialist) who did every lab known to man, lumbar puncture, more EMGs, MRIs, CT scan, genetic testing, IVIG infusions, muscle biopsy and finally referred me to Mayo. ALS neurologist at Mayo did the labs not yet discovered to man, more EMGs (8 as of 2/24) and as of today still doesn’t really know what to do with me. No complaints of any of the Drs – they have been extremely thorough. My legs are emaciated, and my arms have begun to follow over the last year. I don’t have upper motor neuron symptoms, only lower so I don’t meet criteria for ALS. I have been slow progressing…in the eyes of neurologist, and I realize how fortunate that is compared to the normal progression of ALS. I have gone from walking to hobbling to hobbling with a stick to hobbling with a walker to using a power chair in 4 years. Slow by ALS progression standards. Best guess of both neurologists is that I have slow progressing progressive muscle atrophy.
I would be extremely wary of a neurologist who tells you they are “pretty sure” you have ALS. The seriousness of the diagnosis makes it something neurologists in that way. I have seen 5 and pressed them all very hard for a diagnosis of any kind. Also, I have connected with several individuals and read the stories of many others who began their journey with stenosis and as many others that have had a progression path that doesn’t follow the norm. It is absolutely imperative to advocate for yourself. Do your research and ask questions and get as many Drs involved as you are able to get to an answer.
I wish you the best!
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If your neurologists says that you don’t fit the criteria for ALS because of the discrepancy between upper and lower motor neuron involvement and if your clinician is at the Mayo, then I’d like to direct you, and more specifically your care team, to this verbiage from the May Clinic website (link below) :
“ALS affects the nerve cells that control voluntary muscle movements such as walking and talking. These nerve cells are called motor neurons. There are two groups of motor neurons. The first group extends from the brain to the spinal cord to muscles throughout the body. They’re referred to as upper motor neurons. The second group extends from the spinal cord to muscles throughout the body. They’re referred to as lower motor neurons.
ALS causes both groups of motor neurons to gradually deteriorate and then die. When motor neurons are damaged, they stop sending messages to the muscles. As a result, the muscles can’t function.” See https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/symptoms-causes/syc-20354022 This is basic knowledge. Wishing you well.
mayoclinic.org
Amyotrophic lateral sclerosis (ALS) - Symptoms and causes
Amyotrophic lateral sclerosis (ALS) - Symptoms and causes
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All went to my GP and he is referring me to another neurologist in my state of Arkansas. Been going to Missouri. Getting another EMG by the first neurologist in DEC but only on my right side. My GP stayed he thought that was wrong should be both sides. My left side is weakest not sure why they chose the right side. Getting lungs checked out in Dec also maybe we can get somewhere not holding much hope but maybe. Hope everyone is doing well and god bless you all for the good thoughts
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Only one side? That makes no sense medically or logically. Your EMG should be full and complete—that’s BOTH sides of your body—top to bottom and including front to back—yes your back where the 3 groups of paraspinal muscles (erector spinae) are. It’s important to have a baseline even if you are impaired more on one side than the other. Your nervous system is literally like the electrical system in your house. There’s the main panel, sub panels and wires going to every switch/appliance in every room requiring electrical energy. Your body is the same with its very organized brain, spinal cord, upper and lower neurons and nerve cells that connect to all the parts. Demand it—you are worth it! We are here to support you.
Mary
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AAB,
It is very common to be misdiagnosed either as having ALS or having something else when it is ALS. If you can, try and get an appointment at an ALS clinic or a with a doctor who specializes in ALS. I know there may be a wait period but you could get on the cancellation list too.
I feel for you. This sounds so frustrating. Please keep us posted on how you are doing and know that you have support here.
Amanda
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