Tentative ALS diagnosis given

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Annie1959

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I got a big surprise last week when I saw an ENT and after examination said he suspects I have ALS. I’ve had problems with choking and swallowing for about a year. Had negative brain and neck MRIs and negative endoscopy earlier ordered by a neurologist .
I’ve had a vocal cord disorder for many years so my voice already sounds strained and hoarse due to that. I don’t have any slurring going on

He examined me by scope in office and said I have tongue fasiculations and the laryngeal area doesn’t close completely. He also felt I had some right leg weakness I did notice last summer my legs felt very weak when taking walks in the heat. He’s referring me to a neuromuscular doctor.
I saw that he went so far as to put ALS as one of my diagnoses
Does giving me this diagnosis sound a little off seeing as I haven’t even had an EMG or seen a neuromuscular neurologist yet? Or is it possible that the symptoms I’m having combined with what he saw is enough to warrant it? I’m not sure what to think.
 

Nikki J

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Yes definitely inappropriate. An ENT is not qualified to give such a diagnosis. You absolutely need to see a neuromuscular specialist and there are diagnostic criteria that include an emg other tests and clinical findings that you have not mentioned

I would independently verify the credentials of the doctor you are referred to as well. My trust in this ENT would be low.
 

Annie1959

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After taking some time and doing some research those were my thoughts too. Thank you for confirming. The doctor came highly recommended by a friend who has some pretty severe problems and I did check his credentials before I saw him. A very nice person and was thorough in his exam. He said he he wasn’t going to tell me he thought ALS until I asked but when I saw the diagnosis on the chart I realized in his mind he was certain. I was really surprised to see it listed.
Anyway thank you Nikki J for your input
 

rao

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I was told ALS before I had my emg too, usually when one exhibits both umd and lmn weakness (after clean bloodwork and mri) then there's very very few mimic that an emg would pick up. most mimic would show only lmn weakness.
 

Nikki J

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The op was not told this by a neurologist and there is no evidence they have any umn signs at all nor are their symptoms clearly lmn. Although they had mris there is no mention of the extensive bloodwork needed to rule out mimics.

the op is going to see a neuromuscular specialist- hopefully one with excellent credentials who will be able to assess them properly
 

Buglaw

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I had a similar experience with an ENT and speech pathologist. But neither of them told me or listed it in my chart. They referred me to a neuromuscular neurologist and then called me twice a week to make sure I made the appointment. When I showed up to the neurologists office they told me that the ENT and speech pathologist thought I had ALS or a similar disease.

It’s not inappropriate for them to Suspect als or refer you to a neuromuscular neurologist, but they are not the right person to diagnose that. I also don’t think it’s inappropriate for them to say it’s a possibility, but they shouldn’t be diagnosing you. That’s like a primary care doctor diagnosing leukemia.
 

Annie1959

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Bugalaw so was the ENT correct?
 

Annie1959

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I already have an appointment for later this week with the neurologist. Since I’m short on time I was hoping you might point me toward a list of questions to be armed with for my visit. Thank you
 

Nikki J

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I am happy you have an appointment so soon. Are they an ALS specialist?

good to prepare here is a sticky on that Important - READ BEFORE POSTING! Getting a diagnosis

ask primarily what is wrong with me? They will likely say not sure yet. Ask what is in their differential and what tests you need to find out.

a concise timeline is helpful and writing your question down even if just for your own reference is good. It is easy to forget something as appointments can go in different directions and are inherently stressful. If you are able to bring someone to take notes that would be great.

if you do get a diagnosis - I so hope not - you will need a second opinion and it should be at an academic medical center. I can recommend Wash U in St Louis. I know it is a distance but they are an outstanding ALS center

please do let us know
 

Annie1959

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Well you made my day Nikki. My appointment is at Wash U so I’m glad to hear you say that. I assume you have experience with Barnes? The dr is in the neuromuscular speciality
 

Nikki J

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Bucelli or Miller? I know people who are seen there and one of their fellows from last year was hired as an attending at the mgh ALS clinic upon graduation. I am of course prejudiced but mgh does really only hire the best of the best.
 

Annie1959

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The referral was to Bucelli but I’m seeing Smith. They said Bucelli will be in office that day though and will be looped in
 

Nikki J

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Sean Smith trained there you are in good hands. What day is your appointment? I will be thinking of you
 

Annie1959

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It’s Thursday. Thank you so much ❤️
 

Nikki J

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What happened?
 
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