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
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