Diagnosis discussion. Moved from CIHALS thread

[KimT]

I was given "possible", then "probable" As Nikki says, most reputable doctors want to be sure and there are so many mimics. Mine was a very hard case to diagnose because I had strength in all limbs and they held off with a diagnosis.

PLS is even harder because it might not show up on an EMG.

We are here to help.

 

[Clearwater AL]

Nikki, thanks.

Kim, you apparently had a Neurologist who was willing to worry you with anxiety
on your path to diagnosis. " they held off with a diagnosis."

I have never felt that "possible" then "probable" approach to a patient with the
time span in between further testing does the patient any good concerning
anxiety. Hoping it may be something else only goes so far with someone's
emotions.

Whatever.... it's the way it goes sometimes.

PS. If I were a Neurologist and I am not I would tell a patient, "There appears
to be a possible Motor Neuron issue present being the EMG is questionable.
Further follow up and testing will help us determine what issue it is." without
dropping those three words (ALS) which is the very worst of all possibilities
before a confirmed diagnosis has been determined.

 

[KimT]

Al,

I think because my EMG was so classic for ALS, he pretty much had to say possible. I also showed brink reflexes, primarily on my left side and my breathing was not normal.

I asked him outright what his thoughts were on what it might be. With the "possible" I was able to get two other opinions quickly, both probable.

 

[KarenNWendyn]

PS. If I were a Neurologist and I am not I would tell a patient, "There appears
to be a possible Motor Neuron issue present being the EMG is questionable.
Further follow up and testing will help us determine what issue it is." without
dropping those three words (ALS) which is the very worst of all possibilities
before a confirmed diagnosis has been determined.

Al, you’ve used the words “appears”, “possible”, and “questionable” all in one sentence. The poor patient would look at you at that point and ask if you were telling them they had ALS. Some patients insist they get an answer and don’t take very kindly to “appears, possible, and questionable”. That’s why some doctors use the “possible and probable” terminology or just tell the patient they “don’t find anything conclusive at this point; come back in 6 months.”

ALS, and especially PLS, can be a bit like those old Polaroid cameras. The picture would first come out shadowy. It was fun to guess what showed. Over time the image would develop and become more distinct until it was obvious.

Ram, get another opinion for sure but also recognize this does take time. Let us know how we can support you through this.

 

[Clearwater AL]

Karen, I'm questioning a Neurologist using those words "Possible - "Probable" to a patient
without more overwhelming evidence that it is in fact ALS with so many other possibilities on
their path to a definitive diagnosis. One month being told "Possible" a month or three later
being told "Probable" then possibly months after with no real answer living in anxiety.

But, I did write.... some Neurologists.

How many times have very knowledgeable members here have told posters EMGs can be
questionable indicating the possibility of being something else?

Yes, some patients want a demanded answer if their path seems to be taking too long to
them. Well, as you know being a doctor... it doesn't work that way. Malpractice?

What's crazy to me following this forum for some time.... for some weird reason some
people express themselves hoping or wanting a diagnosis of ALS. Are they serious?

Whatever.... back to PLS.

 

[EricInLA]

My experience was similar to what Kim describes. My EMG showed possible MND and the neurologist - an neuromuscular/ALS specialist - combined that with my brisk reflexes to conclude that ALS was "most likely". I'm simplifying a bit but that was basically how it happened. When I asked whether and where this falls on the official international standard for diagnosing ALS, he had to admit that by that criteria, it was technically only "possible ALS". But in so many words he told me I couldn't take comfort that ALS was only "possible" - he was not seeing any other scenarios or possible mimics for me based on all my testing, and gave me a Rx for riluzole. The "most likely ALS" diagnosis was then confirmed by another specialist at a different institution. I suspect this is how it often happens in tough, slow progressing cases. It seems PLS is a slightly different animal though.

 

[Kristina1]

Remember that "probable ALS" doesn't mean that you "probably" have ALS. It means that you straight up HAVE ALS, and that "probable" is the classification for number of regions of the body that your ALS falls into at this time. Many PALS die before ever reaching "definite" ALS. It's a bizarre and poorly worded set of ALS classifications.

 

[Clearwater AL]

Not to make anyone ill with this...

You have ALS when your Neurologist designates your record/file with the diagnostic code for ALS.

Until then....

 

[KarenNWendyn]

Not to make anyone ill with this...

You have ALS when the neurons in your motor cortex, corticospinal, and corticobulbar tracts undergo degeneration, and you are left with both upper and lower motor neuron signs as a result.

Until then...

 

[EricInLA]

OK, you've both made me ill now. I'm gonna go watch a ballgame to get my mind off this. Wait, it's still All-Star break, no games. . . oh I'm screwed.

 

[Nikki J]

I moved these posts to avoid hijacking the original thread

 

[Nikki J]

It is my opinion that patients have an absolute right to know their differential and the doctor’s thoughts and plans. It may be that some people have underlying anxiety issues and need a different approach However many people will be made anxious by not being informed. Knowing something is seriously wrong and undergoing drawn out testing is extremely stressful.

not telling people if they are asked to “ protect” them is a form of paternalism which I loathe. It is similar to the policy of studies I have participated in where they only tell you results of validated tests because “ we don’t know what the other results mean”. Sometimes they won’t even share validated test results I'm talking about observational studies so it isn’t a question of fearing compromise of placebo.

 

[Clearwater AL]

Karen, as you said....

"You have ALS when the neurons in your motor cortex, corticospinal, and corticobulbar
tracts undergo degeneration, and you are left with both upper and lower motor neuron
signs as a result."

That would meet the criteria for a Neurologist to sign off to the diagnostic code for
confirmed ALS.

Are there sub-codes for "Possible" or "Probable" that would make a patient eligible
for benefits.... SS - SSDI - Medicare?

 

[Nikki J]

No subcodes for the possible probable. They are both ALS if they are being used in the EL Escorial sense. All should be the 12.21. 12.20 is motor neuron disease unspecified which might be used for people in a limbo. I wouldn’t count on ssdi for that code though it has happened 12.24 is hereditary mnd ( FALS) but the only time anyone ever used that for me was when I was hospitalized for something else in a different healthcare system and the coding was done by non neurology. Mgh uses 12.21 for me

 

[KarenNWendyn]

What I’m saying is that a number of people are misdiagnosed, either with ALS when they don’t have it or with something else when they do. The terminology “ALS” is important for disability benefits, etc., but unfortunately some people are awarded these benefits prematurely because of misdiagnosis while others actually have motor neuron degeneration and are denied benefits because of delay in the proper diagnosis.

Irrespective of what label the doctor uses, one’s motor neurons are either degenerating or they’re not.