Concerned-bulbar symptoms

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BreBe999

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Hello,

I’m a 31 year old male concerned about bulbar ALS symptoms.
My symptoms started in mid-March. I would feel minor spasms in my throat when falling asleep that would awake and alarm me and affect my sleep. I didn’t think much of it, but one day I was driving on the freeway with a friend in the car when all of a sudden my throat felt like it closed and I couldn’t breathe. I had my friend take me to the emergency room. They said it was a panic attack (I never had one but I trusted their advice and I tried to move on) .
In the next coming months up until now I have had more consistent symptoms that involve swallowing. It feels like I can’t initiate a swallow (but food and drink goes down fine). I didn’t think much of it, tried to attribute it to anxiety and called my primary care doctor. She also thought it was stress and anxiety and prescribed me vallium. A few weeks went by and symptoms were still persisting so I reached out to an ENT. He ordered a swallow test and exam of my esophagus. The esophagus test came back fine with mild reflux, but the speech exam was different. The ENT and speech pathologist agreed that I had overall weakness in swallowing that was “abnormal for a man my age” and even set up a few speech therapy sessions. They said the condition has the potential for food and drink to enter my lungs. The ENT has referred me to a neurologist because he considers his work done. I sensed concern from both.
Beyond the throat tightness and difficulty swallowing, I am not experiencing any other “bulbar” symptoms. My tongue seems fine. Jaw cracks sometimes but I think it’s TMJ related). I do get some shortness of breath but I attribute it to the combination of stress and swallowing.
I know that the forum states that swallowing is usually not a first symptom, but I’m curious as to what the other possibilities are. If the ENT is thinking is neurological, I’m having trouble not looking into neurological issues, specifically this one. I’m waiting to talk to the neurologist but was hoping to get some feedback in the meantime. I would truly appreciate it. Thank you!
 

affected

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Swallowing issues are certainly an initial bulbar symptom, but your descriptions don't really match up with what usually happens.

Hopefully you can just stay calm and take care when eating and drinking - tuck your chin before swallowing helps.

Looking into neurological issues for yourself is jumping the gun with no medical background, and the one thing you can control is how you live your life until a diagnosis is found. I would suggest you work on general health, nutrition, sleep and doing all that you can to make yourself feel relaxed until you get a diagnosis. You won't ever get today back, so make the most of it.

Go into the neurologist with an open mind as they see thousands of different conditions, most of them treatable.
 

BreBe999

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lgelb

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I would look first at hydration, which many guys your age are not great at. Allergies, even to food, can also cause perceived throat closing, so a food diary might be useful.

If you are waking up from this, which I would tell the neuro, a sleep study may be recommended, and there are way to do that at home. You might need a CPAP or BiPAP.

I suspect the neurologist will help reassure you that a neuro dx would be the exception, not the norm, in what you describe.
 

BreBe999

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I met with the neurologist. He said it’s possible but unlikely. Especially since he said that I was well spoken, looked well, and wasn’t displaying any concerning symptoms outside of dysplasia (and the sleeping issue/spasms which I haven’t experienced since March). I told him that I had some twitches by my right knee-but I’ve had a history of damaged nerves, atrophy and cramping in that leg from being born with a dislocated hip and drop foot. He didn’t seemed too concerned about that.

He ruled out Parkinson’s and MS. Saying that I would have more specific symptoms with that. He ordered and ton of bloodwork (all of which came back fine). I just got my MRI done today. I’m concerned that if that comes back all clear-what else could this be? I’m dreading any further testing at this point. Any insight would be most appreciated!
 

lgelb

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I don't know what the swallow test really showed, so it's hard to offer differentials, but MS and Parkinson's are not the leading cause of swallowing difficulties. GERD/EE is one, though, and you mention a reflux dx. Anxiety would be a further exacerbating factor, since it can cause dryness.

Anyway, once the neuro is fully confident that you don't have a neuro disease, he can refer you to a gastro or back to the ENT for further evaluation from the swallowing perspective. Again, none of this suggests ALS at all.
 

BreBe999

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They detected mild GERD in the first test and put me on medication for it. I've been on it for 6 weeks and still haven't seen a change in swallowing. As far as hydration is concerned I believe that would appear in the blood work. Anxiety is definitely an issue, but I don't know if that would warrant abnormalities in the swallow test.

They detected something in the swallow test. The epiglottis was allowing mild aspiration. They said there was nothing structurally wrong but the muscle movement was not 100 percent normal. I have to go to speech therapy.

At this point, I don't have any bulbar issues outside of the swallowing. Speech is fine. Chewing is good. Everyone says I look and sound fine. I did notice twitching in my leg last night, but when I used the calm meditation app it seemed to go away. I've been under a lot of stress and have a hard time with my appetite.

Would appreciate anymore feedback on this! Thank you!!

MRI just came back fine

Any thoughts?
 

KarenNWendyn

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Medicine is not a perfect science. Not all patients have a textbook presentation for a particular condition, and doctors don’t always have all the answers. For some patients, the condition evolves over time and may not be readily apparent.

That said, your current presentation does not suggest ALS and apparently your neurologist doesn’t think so either. It is likely something more common that will either resolve itself or become apparent in time.

I think your best bet is not to jump to conclusions but to keep working with your neurologist. If he becomes concerned about a motor neuron disease, he will order an EMG.
 

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Please understand that while you are very worried, your symptoms are minor, vague, and point to nothing serious, particularly ALS. My husband died of bulbar onset. You are then asking people who are actually dying and may be extremely paralysed and breathing with the assistance of machines to jump up and constantly reassure you or answer you.
As Karen says, don't jump to conclusions, let the doctors do their tests in order and decide what is next.
You are eating up every day with this, and regardless of any diagnosis you won't ever get this time back.

Come back and tell us any results, but that's all we can do. We have given our opinion, now it is up to you to work with your doctors as they understand what they are seeing and testing.

Anxiety will make symptoms worse, or make you focus on minor symptoms as though they are major.
 
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