Nasal congestion as part of Bulbar symptoms

[briana]

Hello,
My name is Briana. My sister was dignosed with ALS a few mo ago; In November I moved (500miles) in with my sister (she is single) to help her.
It sems that she is progressing rather rapidly and recently developing more "bulbar symptoms".
Even before her diagnosis she complained of constant throat clearing and over the last 12 mo had at least 4-5 appts with ENT specialist.
At the time of her diagnosis, I think, she was considered a limb onset. She is often congested and complaints of sore throat. Last couple of weeks she has a lot of nasal congestion and her nouse constantly running on one side.
Her neuro is irritated with me calling and asking questions and her primary doctor tells us to check with the neuro.
My sister is her fourties and was realtively healthy before this monsterous ALS disease.
I get more information and advice from this forum than ofrom our medical providers.
I'm so sorry for ranting, but would appreciate your opinions.
Briana

[serenade]

I started out the same way, try a sinus wash. The kind that is a bottle with packets of sinus wash, it gets all the yuck out! Did your sister have her tyroid checked? She should!

[briana]

Thank you Serenade, My sister been using the Saline bottle since May. She is also using all kinds of decongestants withoot much help.
Briana

[Danijela]

My partner had nasal congestion and was unable to breathe through one nostril. This was not related to mnd ( his is limb onset). He had surgery on his nose (septoplasty) and can now breathe normally. While I am not saying that your sister's symptoms are not ALS related (I simply don't know) I wanted to share our experience of it being something else. D

[Judith]

I was dx with PLS, bulbar onset in 2006, although the symptoms started in 2004. I never had the symptoms of sore throat, nasal congestion, or a runny nose. At the onset, my throat felt like it was closing up and I would speak through my nose; then it went into my speech slurring and then inability to pronounce certain letters. I remember the letter "K" was the first. Finally all ability to be understood was lost.
I would change neuros if you can. Being irritated at you for trying to find out what is happening to your sisters life is uncalled for!

Judith

[halfin]

The throat clearing could be post nasal drip. Her symptoms sound like possibly allergies. Has she tried a steroid nose spray? It sounds like the ENT would be the best specialist to help her. I have not had those problems but I have had fluid and congestion in my ears off and on for several months. Think I need to go back to my ENT doctor again.

[valentine]

I was dx ALS November 2008 bulbar ,i find that throat is always yukie but my doc gave a nasal spray which seems to help also when i use the bi pap at nights it also seems to help i dont wake up with a lot of phlem in my throat. I dont know if this helps but i use ratio-BECLOMETHASONE AD 50mcg

[cara]

Oddly enough my mom had a runny nose for years, but it seemed to clear up as her symptoms progressed. She also had bulbar onset. When I first took her to the dr. when she was exhibiting symptoms of word slurring and her throat feeling wierd they sent her home with an allergy pill. I persisted with ent's and a nuerologist. In the end her nose started dripping again (because I think she caught a cold, we couldn't tell because she couldn't communicate) we bought one of the bulb things they use for babies and that seemed to help clear her sinuses.

[DouginDet]

Hi Judith ,
Happy Holidays and to everyone else... I have bulbar palsy since 2004 or so, I also have a runny nose I guess that sometimes goes with the dx. I don't use anything for it, just blow alot, when you have als or anything like it you become nasily with your speach well most of the people do. I find when my doc puts me on steriods my nose clears up for a while. Does your sister take them periodically? That helps me alot now because my arms are getting hard to lift up. I'm still walking thank God with a cane but, its better then a chair, really I get so wiped out from walking I would welcome a chair but, I feel I would be giving up, enough of me. talk to your sisters doc about using a nasil steriod. That might help. Take care G-D Bless.

[phmeleedy]

I am new to this form. We are in the process of trying to diagnose my husband. We have an app for an EMG on Thursday hopefully that can give us some answers. What other symptoms did you have to be diagnosed with bulbar ? I feel like no ones believes us. He had a sleep study to see if he had apnea, the tech said it was not apnea, but he was waking up from not breathing,so we have to wait for the results in about 2 week. We feel so lost in all of this, I feel like the Drs thinks it is anxiety!


need help

[handinhand]

Hi,I had bulbar onset...I never have had nasal nose drip.when I was first being dx by a Nero, he did ask me if my nose runs a lot? So I am thinking it is one symptom... Lin

[helpinhand]

Oh my gosh that is the very same problem we are having with dad, so I will be watching with great anticipation for any suggestions or quick fixes. We have tried flonase without success. Unfortunately not enough breath to blow hard enough to really clear it either.