Someone With Bulbar Experience?

[nowaythiscanbe]

About a month ago I started having a bad headache in the morning and throughout the day sometimes. I don't usually have these types of headaches so it naturally worried me. My vision also seemed to be a little bit hazy without my glasses and I noticed I was waking up more frequently during the night.

I started getting nervous/anxious about my health and thought I was going crazy. My GP, a 2nd opinion GP and an ER doctor all said that I have an anxiety issue and possibly depression. I really didn't feel like that was the case.

So I started to google stuff that caused headaches, eye pain, twitches all over and the like and I ran across bulbar onset als. I then began to realize this could be my issue. I have jaw pain/soreness, headaches, two spots on my tongue that flicker like a really fast heart beat, and my tongue feels swollen now. I don't have any trouble with swallowing water or food. My voice sounds hoarse and like I am straining. I can push both of my cheeks out and lick all of my back teeth and almost touch my nose... I know this may sound crazy, but could this possibly be bulbar als?

 

[codyclan]

No, Bulbar ALS does not present like this. Twitches mean nothing. Pain, headaches, vision problems--nope not ALS. Stay off Google and follow-up with your doc to determine what else might be causing your symptoms and it is NOT ALS.
Best wishes,
Tracy

 

[Livealot]

My husband had PBP , you share no symptoms with him. He had speech problem's only, he felt fine .We spent 2 years seeing doctor's. The last year he had swallowing issues, again no pain .All the best to you.

 

[nowaythiscanbe]

Thank you for your replies. The main things that are scaring me now is that my tongue won't stop shaking. When I look at it, there's definitely fasiculations and they are becoming more sporadic by the second. I'm not slurrying any at all. I just really don't understand why my tongue won't stop doing this.

 

[codyclan]

Again, twitching or fasiculations are not diagnostic, which means no one is diagnosed with a disease, especially ALS, on the basis of twitching. There are many reasons for twitching, even tongue twitching, and sometimes body parts twitch for no reason. Work with your doc, but you do not have ALS symptoms, so you would best be served by moving on from this site. Staying here is just fueling your anxiety. Make an appointment with your doc for follow-up .
Best wishes,
Tracy

 

[ShiftKicker]

Tracy is right- Time to go back to the doctor, friend. If the people here are unable to see a pattern of symptoms that say "ALS", remaining here will not help you.

While I can not say it's all anxiety or not, a doctor is your best bet. This forum will only provide further fuel for your symptom worries and net you no further reassurance. If two doctors and an ER doc can't convince you, strangers on the internet won't either.

If you have any further questions to ask, take them to your doctor. This forum is not for you- which is definitely a good thing.

 

[nowaythiscanbe]

Now I am waking up with a tremor type feeling in my throat, lips and tongue. I couldn’t sleep for more than an hour and woke up to a smoky room with my tongue and eyes almost locked up. This is it isn’t it? My tongue is shaking in my mouth. My shoulders are going crazy with fascis too. My tongue is going numb on one side. And it feels like my throat is doing the same on that side. FREAKING OUT!

 

[lgelb]

Smoky room?

 

[codyclan]

NO, that’s NOT ALS! Seriously, No.

Anxiety can do crazy things to your body. Three doctors have said no ALS and probably anxiety, time to follow up on that issue and stop chasing a nonexistent ALS diagnosis here. Definitely time for you to move on from here. Best wishes,
Tracy

 

[nowaythiscanbe]

Could it be respiratory onset by any chance? I’m 30 years old. I’m not going crazy here. At least I don’t feel that way. I thought people have eye issues all the time. The room looked hazy/smoky. I assume it’s because I may have respiratory or bulbar onset that was effecting my vision.

 

[ShiftKicker]

I think you have spent enough time here. Please visit with a doctor. Please do not post any more symptoms. The reassurance you have received here is not being accepted or believed by you. It's best for you to see someone in person to get medical attention.

Hanging out here is increasing your anxiety and taking up the time of people who have already answered you multiple times. Please do not continue posting here until after you have seen a doctor.

 

[nowaythiscanbe]

I really appreciate all of your replies and inputs. I know you don’t have to do this, and your time is extremely valuable. However, I do want to know if anyone ever experienced headaches, Lispy speech, fasiculations everywhere and waking up every hour or so out of breath as any of their first signs of bulbar onset.

 

[Kristina1]

No. I have bulbar onset it is nothing like you describe.

 

[Goldie1027]

You have anxiety. If you can talk, swallow and eat then go live life to the fullest.

 

[Atsugi]

Don't know why I'm going to answer this, but I will.

want to know if anyone ever experienced headaches, Lispy speech, fasiculations everywhere and waking up every hour or so out of breath as any of their first signs of bulbar onset.

First, NoWay, you've been solidly answered that you don't have any ALS, whatsover, so when you ask another question it is 1) irrelevant to us, since you don't have ALS, 2) a bit insulting, like you didn't believe us when we said you don't have ALS, and 3) kind of silly, don't you think. It's kind of like opening and closing drawers, looking for your glasses, and then, after you find your glasses, you open just one more drawer....

Second, I never heard of anyone describe those symptoms as having anything to do with ALS, bulbar or otherwise. For those of us who understand ALS, those symptoms wouldn't make any sense. It's like saying that a person is worried they might have a brain tumor because they woke up with a toothache and a boil on their butt.

Hope this helps everyone just a little bit.