how does bulbar onset present itself?

[tatsu15]

Hello again,

Here is my story. I've been on here before worried about als. I have had 2 babies back to back in the past 2 years.

I told myself I would move on but my symptoms are quite worrisome.

1. I notice that my face, nose, mouth, lips, and throat are twitching more and more. My lips sometimes tremble for no reason. It will tremble alot while I am rocking my baby on a rocker.

2. My nose will get tight and start to twitch.

The most worrisome for me is that my throat will twitch after I drink something. I have some parathesia around lips too (like pins and needles) and once the parathesia fades, my lips and mouth will twitch.

I visited my neuro yesterday and she says it will go away eventually and she's not worrid.

I had a clean emg 2 months ago on my hands and arms. They never tested my face.

I told her I have some delayed swallowing but she said it could be gerd and my nerves are fine.

I am scheduled for brain mri and eeg so she can put my mind to rest.

All my blood tests are normal so far... they did alot of blood tests.

Does this sound like early symptoms of bulbar? I know that bulbar you can have a clean emg until it spreads to the limbs.

Why are my lips trembling? This just doesn't seem right and I'm worried again.

[halfin]

I was diagnosed recently with ALS with bulbar onset and it was nothing like what you describe. My initial symptom was slurred speech. I could not pronounce certain words correctly, my tongue was slow and hesitant. I also found that my breathing while speaking was becoming unnatural, I would speak only a few words and then have to take another breath, kind of a gasping pattern of speech. Not sure what caused that. I do have twitching but mostly in my body. The doctor reported he could see some twitching in my tongue but I can't feel it.

I'm sorry you are feeling poorly but it doesn't sound like ALS to me. Your life must be very busy with two small children and no doubt other responsibilities. I think sometimes stress can lead to twitching and other problems, and you certainly sound like you have every excuse to feel stressed! It is good to check things out but if you get a clean bill of health it would be best to try to put it behind you. I'm sure the last thing you need right now is to be worried about your own health when so many others are depending on you. Good luck and I hope you continue to get good news from your tests.

[tatsu15]

Hello halfin

Thank you for your informative response. I am sorry about your diagnosis. I hope you are staying well however and getting better!

Yes I am somewhat reassured by your post. I hope it is nothing serious. I haven't been thinking about als only when the twitching starts up is when I become alarmed again. You are right I am very busy with two kids and I don't get much sleep. I was healthy and fine in my first pregancy.

I started having these weird symptoms in my second pregnancy and now almost 5 months postpartum. I am still exclusively breastfeeding through all this.

Well I hope that I will be ok and thanks so much again for your kind response. Stay well.

[BethU]

Tatsu. I agree with Hal that this doesn't sound at all like bulbar onset.

I, too, started with slurred speech and that gasping breath Hal described. (I didn't ascribe it to ALS till now ... always thought it had to do with my heart. Maybe I was wrong.)

I had no visible twitching or trembling on my face, and only discovered teeny twitches on my tongue when it was at rest in my mouth (almost everybody's tongue twitches when they stick it out) during a routine exam 9 months later.

If your doctor is not worried, I don't think you should be, either. I think Hal's right ... with your responsibilities and the stress your body has been through, a little stress reaction is normal. Hope all your tests are good!

Good luck.

[BarryG]

Same for me, slurred speech was my first symptom. Not twitching, I still don't have any twitching even though I cant talk so that anyone can understand me and can't eat much of anything. And I don't know about anyone else but my very first emg showed signs in my arm about two months after my first bulbar symptom and they never tested my face. If your emg was clean I would relax and believe your doctors. Try to get some rest and I hope that you have good results on the rest of your tests.

Barry

[shelleynshaggy]

Same for my husband - slurred speech was the first sign along with choking and lower muscle symptoms (babinski sign, etc). He has not been dx as bulbar as of yet. But his symptoms started more like slow onset stroke-like symptoms. He has twitching in his tongue and irregular gag reflex, but he does not feel the twitching in his tongue or legs. He notices them in his arms more because he can see them.

[indigosd]

Slurred speech that would come and go was my Husband's first alarming symptom. I also noticed that he was DROOLING just alittle-drool in the corners of his mouth and I did see that his tongue was a quivering mass at rest in his mouth. He did not notice or feel any of these symptoms. Oh, and a lot of coughing, clearing of his throat and some very scary choking episodes.