Bulbar ALS Conerns

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gobletstahperb

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I am going to link an imgur album to my test results and some conversation with my doctor.


Hi i am concerned that there is a possibility that i have bulbar ALS. I have been having issues for 4-5 months now. maybe longer im starting to realize i may have had issues for longer and havnt noticed them until they really started to impact me. Mostly my issues are with swallowing. Ive been told i have nonacid reflux, dysphagia, and ineffective esophageal motility. I am being referred to an ENT for my oral dysphagia, a neurologist, and rheumatologist. I am a 29 year old man. They wont really tell me what it could be other than it is hard to know for unspecific IEM, thats why they refer me to a neurologist because that could be the problem. I was confused by that and looked some stuff up. Surprise surprise, motor neuron disease seems to be the primary cause of these issues that is not stroke. Now i am afraid. I see the neurologist on the 24th so its kind of soon.

I keep trying to tell myself that im 29 and ALS is rare for my age. And it would appear that bulbar is the more rare form of ALS and it would appear that bulbar ALS is even more rare in the 25-40 age group than limb onset. But its not really helping, these problems im having are very real and they are starting to get concerning.

Is there a good possibility that my neurologist will tell me i have ALS...

Other symptoms that have been happening more recently
-throat clearing
-cough
-post nasal drip (saw an allergist who did a test that said i have no allergies)
-When i talk i am often told i sound like i have extra spit in my mouth and throat
-I often find myself breathing in saliva/liquids

Edit: i should note that some of the more severe problems like oral dysphagia have become much more pesrisent in the last 4 weeks.
 

affected

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I can imagine you are concerned, but don't jump too far ahead.
Not everyone with a persistent headache has brain cancer, but many tests may be done and several specialities consulted.
The worst thing you can do is spend the next 3 weeks trying to jump ahead and second guess what might be going on, with no medical background yourself.
Take a breath, step back, look at your calendar and figure out how many things you can do to improve your general health and wellbeing, both physical and mental, between now and your appointments. Then start making the most of this time, as regardless of the diagnosis, you won't get these few weeks back.
Try reading through this link as it also gives some great examples of many other diagnoses that people receive after being convinced they have ALS. You will see that no matter what google gives you when you search, there are many things that are much more likely.

Trawling here will be the worst thing you can do for yourself, please resist for your own sake.

 

lgelb

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Adult-onset muscular dystrophy or other muscular issue is far more likely than motor neuron disease, to name one. But it's still most likely that you have a normal GI variant [idiopathic dysmotility] and nothing systemic. Everything you have listed can be down to a weak muscle/passage fiber or two. As Tillie noted, it's quite a stretch from there to ALS. It's worth tinkering with your diet, exercise, and lifestyle to consider what helps/hurts the symptoms, while you let the ruleout process play out.

Best,
Laurie
 

gobletstahperb

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Hey, im going to quote you for clarification if you don't mind...

"Not everyone with a persistent headache has brain cancer, but many tests may be done and several specialities consulted.
The worst thing you can do is spend the next 3 weeks trying to jump ahead and second guess what might be going on, with no medical background yourself."

I think you may have pinpointed the source of where my fears started. I have not seen many medical specialist in my 29 years, im usually relatively helathy outside of physical therapy, allergist and the occasional flu. My question about this quote is more clarification. Are you saying that specialist referrals are often simply doctors doing their due due diligence?

Thank you.
 

lgelb

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Not to usurp Tillie's right to answer this, but the quick answer is...yes. Failure to refer with a bad result (which we don't anticipate at all for you) leads to lawsuits, which of course, docs and their employers -- most docs are not independent any more -- seek to avoid.

Also, as revenue for the system, referrals within the same systems are incentivized in that doctors' compensation is built in part on that.
 

Clearwater AL

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Sorry, I can’t resist, I made my mode not to reply anymore… but.

Dr. Google and the Internet has been a gift to the near Industrial
Medical Complex. Twenty five years ago Neurology was just
another part of Medical Complex. Today… it’s huge in the
aspect of people looking up “twitches” “swallowing issues”
“feeling weak” and “speech” which all have numerous conditions
unrelated to ALS and MND.

Laurie is right on about the legal aspect and…

“Also, as revenue for the system, referrals within the same systems
are incentivized in that doctors' compensation is built in part on that”

Follow the money.

Googler’s… give your co-pay money if you won’t listen to your GP
because Dr. Google has convinced you - you need to see a Neurologist.
Your persistence will force him/her to “CYA” and set up a Neuro
appointment likely within the system he/she works.

But… then do you believe the Neuros? Often we’ve seen not. Then…
go Neuro shopping. More EMGs...

Further drive up the cost of Health Insurance for all… and if you have
insurance and are bitching about the cost. What it costs you.

Is Google getting paid for their medical directory service?… a billion
dollar company.

I may be wrong… I’ve admitted my mistakes before.

Ok, back to my mode and the city I posted in my Bio… “Get Real”

I hope I have been here.

PS. Maybe I have attitude about this because my diagnosis did not
come from Googling my symptoms. My wife had a Ortho appointment.
During the appointment he casually asked why I was walking with cane.
He suggested I see him so I did. Complete exam and he was thoughtful
of the possibility of Chiari Malformation Syndrome. Referred to a Brain
Specialist. Nope. Got referred to a well known Neurologist… an EMG.
 
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