How is Bulbar ALS diagnosed?

[wembleton]

I have read in a bunch of threads that many people with Bulbar ALS had 'clean' EMGs so this leads me to wonder how one can be certain of a diagnosis or non-diagnosis early on.

My voice started getting hoarse and weaker a few months ago. I saw a neuromuscular neurologist at Mt Sinai in NYC who reassured me that I definitely didn't have ALS but I might want to get an MRI just to be on the safe side to rule out MS. Only the vocal weirdness has persisted but for two weeks I had random twitches, weakness in my hand and was messing up my typing. Now, it's only the hoarseness and vocal weakness and breaking & slight glitch in my throat when I swallow.

What are neurologists looking for when it comes to Bulbar ALS? How could my neuro be so certain it wasn't ALS even though my voice has been randomly hoarse for a long time? She said something about how my specific vocalization was different than an ALS one but I forget the specifics. Can someone elaborate? Would be immensely grateful!

 

[affected]

Bulbar ALS is diagnosed the same way all ALS is.

They do a lot of tests to eliminate other disease processes, look for the hallmark signs of ALS, and use the EMG to compare it's findings to all the clinical findings.

The great news is that "my voice has been randomly hoarse for a long time" is NOT a bulbar symptom so your neurologist is completely correct that it is not even remotely on your radar.

My husband died of bulbar onset ALS, so I'm very certain.

Keep working with your doctors as they can examine you and order whatever tests are needed based on what they see clinically and what test results they get back. All the best.

 

[Atsugi]

"How could my neuro be so certain it wasn't ALS"

Two observations, wrapped in rhetorical questions:
A. You'd rather ask total strangers on the internet than ask the doctor who actually knows the answer?
B. You don't have ALS. Now you're asking a group of paralyzed dying people to explain that to you?

 

[Vincent]

One of the things we don't do is give out symptoms to healthy people so they don't develop symptoms they don't have. If you have been told you don't have this monster, run with it.
Vincent

 

[wembleton]

"How could my neuro be so certain it wasn't ALS"

Two observations, wrapped in rhetorical questions:
A. You'd rather ask total strangers on the internet than ask the doctor who actually knows the answer?
B. You don't have ALS. Now you're asking a group of paralyzed dying people to explain that to you?

I haven't been able to get in touch with my neuro and the wait is very long.

I would suggest that you don't answer this kind of question if you can only answer with nastiness. I imagine it doesn't benefit either me or you. I imagine there's also a reason why people are encouraged to seek second and third opinions; because one neuro's opinion isn't infallible.

I was generally asking about bulbar ALS and how it's diagnosed differently. I had read that hoarseness was a symptom but I was told that it is not specifically hoarseness. No one so far has addressed that specific question.

Thank you to the people who didn't try to guilt me for asking a simple question on a 'general questions' part of the board that isn't just for people diagnosed or with a direct connection to ALS.

 

[affected]

I addressed your questions specifically if you read back on my reply.

We recommend a second opinion when people are diagnosed with ALS. When a neuromuscular specialist says you definitely do not have ALS, and you have no symptoms at all of it, we recommend you go back to your PCP and start working on what is going on, rather than pursuing further what is not going on.

I hope that helps.

 

[wembleton]

I addressed your questions specifically if you read back on my reply.

We recommend a second opinion when people are diagnosed with ALS. When a neuromuscular specialist says you definitely do not have ALS, and you have no symptoms at all of it, we recommend you go back to your PCP and start working on what is going on, rather than pursuing further what is not going on.

I hope that helps.

No, you didn't discuss the specifics of Bulbar ALS at all. And I have come across multiple stories of people with ALS whose first neuro said they definitively did not have it. I was mainly responding to the rudeness of the poster Atsugi who seemed to be so offended by my asking a question in a forum of askers who mainly do not have ALS.

 

[Atsugi]

Wembleton, sorry you took offense. I gave two facts and asked two rhetorical questions as a way to show your words to you. Here it is again:

Two observations, wrapped in rhetorical questions:
A. You'd rather ask total strangers on the internet than ask the doctor who actually knows the answer?
B. You don't have ALS. Now you're asking a group of paralyzed dying people to explain that to you?

Before moving on to your questions, let’s start with a fact:

I saw a neuromuscular neurologist at Mt Sinai in NYC who reassured me that I definitely didn't have ALS

Here’s another clue. You said: “Only the vocal weirdness has persisted but for two weeks I had random twitches, weakness in my hand and was messing up my typing.”

Those twitches and weakness went away. ALS never goes away. Once a nerve in the brain is destroyed, it can never again tell its corresponding muscle to move. Also, the motor nerves in the brain don’t rebuilt themselves, so once that weakness happens, strength cannot return later. If your strength came back, it isn’t ALS.

Now your questions:

What are neurologists looking for when it comes to Bulbar ALS? How could my neuro be so certain it wasn't ALS even though my voice has been randomly hoarse for a long time? She said something about how my specific vocalization was different than an ALS one but I forget the specifics. Can someone elaborate? Would be immensely grateful!

I was generally asking about bulbar ALS and how it's diagnosed differently. I had read that hoarseness was a symptom but I was told that it is not specifically hoarseness. No one so far has addressed that specific question.

Vincent, one of our very knowledgeable and well-respected long time members, gave this specific answer:

One of the things we don't do is give out symptoms to healthy people so they don't develop symptoms they don't have.

So the answer is ‘no.’ We have learned over the years that, for several good reasons, we shouldn’t tell people what symptoms they need in order to have ALS.

I’m sure at some other websites there are lots of people who will be very happy to tell you the specifics of symptoms. I consider those sites to be “social” sites. Personally, I think this site here is 100 percent dedicated to caring and advising those who are affected by ALS, so it is closely moderated. As to others people who do not have ALS—once you’ve been told pretty conclusively that you don’t have ALS, it’s time to go and enjoy your new lease on life.

Tillie gave excellent advice “we recommend you go back to your PCP and start working on what is going on, rather than pursuing further what is not going on.” Although a neurologist is a great specialist, they deal only with neurology. A GP medical doctor is trained and experienced in following a health investigation into whatever specialty might be needed.

Good luck.

 

[affected]

Since you are still here I will post my original reply to you again as maybe you missed it. I've added emphasis

"Bulbar ALS is diagnosed the same way all ALS is.

They do a lot of tests to eliminate other disease processes, look for the hallmark signs of ALS, and use the EMG to compare it's findings to all the clinical findings."

It's actually Bulbar ONSET ALS - meaning the early symptoms are noticed in the bulbar region. Most PALS end up with bulbar issues as the disease progresses. If they don't end up with bulbar issues it is because they die before the disease progresses to that region.

When my husband was diagnosed he had both bulbar symptoms and symptoms in all 4 limbs to some degree.

Honestly, as you are being told by neurologists that you don't have ALS, you should try and stay away from here, it is not helping you, it is clouding how you are looking at what is happening. All the best.

 

[KimT]

First, if you want to obsess about bulbar onset ALS, you can google it and find out all the symptoms.

Here are a few: You will sound like you're drunk or slur your words. Other people will usually hear it before you do. Your tongue and swallowing muscles won't work properly. Can you move your tongue back and forth, up and down? Can you drink a glass of water without choking? Can you count to ten out loud and can someone else understand the numbers as you speak them?

If you fail at all of these, you would get a swallow study because things other than ALS can cause these.