Status
Not open for further replies.

Sara_livie

New member
Joined
Sep 16, 2014
Messages
1
Reason
Learn about ALS
Country
US
State
New York
City
New York City
Good Evening,

I've been experiencing a wide range of symptoms over the last month or so that may or may not be related to ALS Bulbar onset. I'm a 24 year old Female here in NY.


1: Twitches in the face and legs. These sort of came on out of nowhere, or at least it's that I never noticed them before until this ALS research and scare.

2: Some changes in swallowing patterns. I found myself have a few little slips while drinking and have it go down the wrong tube. Mind you, this has not been on-going. Also just noticing my swallowing to a really great degree...like swallowing too soon or too late etc.. I don't know if this is just due to being so concious of it?

3. (Most concerning) I seem to have developed pretty intense Post Nasal Drip to the point where I can literally FEEL a big lump of mucus in my throat. It's making it more difficult to swallow and I just feel like I'm constantly swallowing mucus. It's come with a slight cough that causes me to clear my throat etc. I'm not sure if this is the result of a cold or not but I don't feel like I have the common cold with the exception of the post nasal.

I'll tell you why this has concerned me so much:

1: I read a post where two of your lovely forum members here talked about their bulbar experiences (I was going through posts before I posted) and they said the following:

"I first noticed he was always doing a funny throat clearing kind of cough, and I mean he was doing it a lot, and had never done it before. This started a good 8 months before any symptoms he actually noticed." (I am presently doing this)

and another had said: "My bulbar onset started with odd swallowing issues and then slurred speech, that was mid 2011. The swallowing issues kind of went away for a while, but my speech continued to get worse. I had fasciculations in my tongue starting in May of 2012, or at least that's when I noticed them. By Sept. 2012 my speech was greatly affected, but I continued to work until Feb. 2013." (I have odd swallowing issues)


Lastly, Wikipedia says this in reference to post nasal drip: "Post-nasal drip (PND, also termed upper airway cough syndrome, UACS, or post nasal drip syndrome, PNDS) occurs when excessive mucus is produced by the nasal mucosa. The excess mucus accumulates in the throat or back of the nose. It is caused by rhinitis, sinusitis, gastroesophageal reflux disease (GERD), or by a disorder of swallowing (such as an esophageal motility disorder like
dysphagia.)"

Dysphagia is of course a sympton of Bulbar onset.....so basically I'm connecting all of these dots and things and have worried myself past the point of sanity. My boyfriend has gone to the extent of spending time away from me because he's tired of talking about ALS with me.

I did do one smart thing and went to see my GP about these concerns (not the post nasal cause its new) but ALS in general. He checked my tongue, mouth and said my palet had no signs of weakness, all my bulbar was symetrical, and that with ALS being rare in my age group he was 99% sure it wasn't that and I needed to move on.

But again, based off of what I pointed out above with what forum members who have it say, and off of the fact that post nasal is caused by dysphagia which is another ALS symptom, I don't feel reassured. I have no slurred speech of course.

Do my issues sound anything like ALS to you guys? I mean, some of you had the same symptoms I'm having and probably thought it was anxiety or something only to find out 6-8 months later it was bulbar. Also, is the post nasal dysphagia a for sure sign?

I don't know...this forum was my last hope considering I've already seen my doctor. Insight is appreciated.

Thanks
 
Hi Sara,

I have some symptoms same as you, but I have all of symptoms bulbar als (slurred speach, twiching tongue and all over my body, small tongue atrophy on left side in my tongue.. ). Problem in my diagnosing process is i am just 19 (!) years old, I am from Czech Republic (Europe) and here aren't als neurologist, in my city nobody knows this dissease. My neurologist thing i am so youn.. but I had clear MRI, CT, basic blood tests.. and emg in my right leg and right hand was clear. But heart is nobody who can do emg in tongue, probably i will must go to our capital city.. so I am worried, but I try live every day so good as I can. And waiting for my diagnose.. I am waiting now for four months and still progress.
Sorry for my bad english, that is not my strong side.
 
And I'm pretty sure when I said that about the throat clearing cough I said - I don't like to write this here because then someone in the "Do I have" section will decide they do.

Honey, go see good doctors and work out your issues. You don't show signs of ALS, you want to, you are reading and patching bits together to make it so, but you don't.

Go live your young lovely 24 year old life with my blessing.

I better hunt and get that comment out of that thread... NEVER would we have considered he had a terminal illness by that symptom, you are putting the cart before the horse.

Yes he had a cough, you know what every other 999 people with that same thing do not develop ALS.

Do as your doctor says - move on.

Tillie

PS Emminka start your own thread. No wait don't. You will get into the Guiness book of records if you have ALS at 19.
 
Agreed. No signs of ALS.
 
I've had twitches, slur speech and post nasal drip for over 15 years. But then again I have anxiety and have allergies. Slur speech is due to low self esteem and anxiety issues. If I have a FEW drinks my mumbling, slur speech (believe it or not) go away. I guess because I'm more relaxed which leads me to believe the speech is due to personal issues.

That's too extreme to even think you have Bulbar ALS systems. That means I most likely had it since I was a teen and now I'M 32. I'm sure the ice bucket challenge and some googling brought you here.
 
Its allergy season in NY. Take a claritin or call your doctor. But really, go live your life and count yourself lucky. You dont have als.
 
Status
Not open for further replies.
Back
Top