Worried about bulbar symptoms

[Mommax3]

Hello,

I’m a 35 y/o female who recently developed symptoms that I’m worried about. About a month ago, I thought I was having difficulty speaking, but only I noticed. Then, body wide twitching started, but I will say it’s mostly in my chin, jaw and cheeks. I started having difficulty swallowing solids and food would get stuck on my soft palate. I have had a tight jaw, tongue cramps, burning mouth, and talking/eating is a nuisance.

I saw an ent who said my soft palate and speech are fine along with vocal cords and he noted my throat is red (possibly gerd). He had me test several sounds and said they were fine and no nasal speech. However, I get a burning nose after I eat/drink and will sneeze often. I noticed fluid and food feels like it will come out of my nose or gets stuck there. I’ve never had anything really come out, but it happens everytime I eat/drink and the nasal burning is pretty bad. I also have a lot of post nasal drip all day and specifically with foods and fluids.

Ent said to follow up with a neurologist to be sure and my appointment is scheduled, but it’s weeks away. I’m also experiencing difficulty chewing, like my jaw is sore, but I can chew and I can swallow albeit food is stuck. My mouth is dry and I have a painful tongue and the facial muscles are tense and sore. My speech is not slurred. I guess I’m mainly concerned with swallowing and possible nasal regurgitation. Thank you and have a blessed day

 

[lgelb]

Did the ENT bring up possible allergies, including food, at all? These can arise for the first time even in adults.

If that is not their thing, you might consider some allergy testing. Sneezing after eating/drinking if not a mechanical issue or lesion that the ENT didn't find is pretty much a neon sign for irritation/allergies.

I would also consider seeing a dentist -- you might benefit from a bite guard at night. A sore jaw and tense facial muscles signify you could be grinding/clenching in sleep.

Re pain, if you drench your lips/tongue with vegetable oil, does it abate at all? Dryness is a real thing. And if you are avoiding drinking bc of pain, hydration could be all the more damaging.

None of this sounds like ALS.

 

[Mommax3]

Thank you for your reply. My lips are insanely dry and cracked. I do drink a lot, but it’s never enough. My throat is very irritated. I do suffer allergies but take Flonase daily. I will try the vegetable oil. I possibly have tmj and can ask a dentist too. He did not see a lesion and said the soft palate moves as it should, so I guess I should take that as a good sign. He also had me makes the k/c/p sounds and said if I can do that the soft palate closes correctly and he didn’t hear anything concerning. The only thing he told me was to give it a month and if the nasal symptoms continue go back and check again.

 

[Mommax3]

Dr is ordering a swallow study because now I have throat pain and clicking when I swallow. He said he thinks it’s gerd but wants to be sure. Still worried, but trying to stay positive. I am having a tired jaw with chewing, but I still can chew. This is all so weird for me

 

[Paulbx]

As an actual patient of Bulbar-onset ALS, I can tell you that the journey to arrive at a diagnosis of ALS is not short. I had many tests (MRIs, CT Scans, EMG tests, breathing tests, many blood tests). Those tests were the journey to eliminate the many potential disesase which have some degree of cure were not the cause. We only arrived at my diagnosis after 9 months of searching when all other answers were eliminated. And, as some else has written, if you indeed have ALS it will become more evident in time. So, take heart, the chances are good that you have something else going on. I had a growth on my thyroid (which has been removed) which was also a suspect of my slurred speech.

 

[Mommax3]

Sorry to hear of your diagnosis. I’m not slurring my speech and only notice difficulties when my jaw is in pain or tight. Swallowing is not always an issue either. It’s weird because symptoms can come and go, but the main concern is the tightness in my face and jaw too. I’m sending prayers for you

 

[lisa g]

Mommax3, one reassuring thing on your side is that Bulbar symptoms do not come and go and there is no pain involved just failure. I have Bulbar symptoms that started as trouble swallowing solids without choking and noticeable slurring of my speech. I second Laurie's suggestion and see your dentist.