Bulbar Concerns

[Jclay]

Hello All,
I have read the stickies and monitored threads closely to see if my questions have been answered already and can't find much. I am concerned about bulbar ALS. I have been swallowing difficulties for about a year now and don't have any sound answers. I was pregnant when it started and my child is now 9 months old and the symptoms have steadily progressed. I began feeling like I had food stuck in my throat (solids). I was checked by an ENT who stuck a tube up my nose and said he found signs of reflux and put me on a pregnancy safe medication and said reflux would likely go away once my son was born. I took the medication daily but noticed no real improvements. After my son was born, the problem continued, and I had bouts of feeling weak, muscle fatigue, etc. I was referred to a neurologist who did lots of blood work (all normal), an MRI of my brain and cervical spine (normal), a Lyme test, a test for MG and lastly, an EMG of my right leg, arm, hand and foot (normal). He didn't check my bulbar region because he said it was probably the reflux. I went back to the ENT who put me on a stronger reflux medication and I had a gastroenterologist order a barium swallow (just liquids) and it was normal. My swallowing issues continue and lately I've been feeling like I'm choking on cereal in milk, problems with meat, bread, etc. and I have had a couple instances of my throat just not swallowing hot beverages or soup on the first try (like it forgets). I have also been to a rheumatologist who didn't feel as though my symptoms were rheumatological in nature. I am feeling discouraged and of course, started to research on my own. Worst idea ever. Any one have any suggestions? I have another appointment to go over swallowing with my Neuro on Friday!

 

[Atsugi]

I don't see any ALS there, bulbar or otherwise. The swallowing difficulty you describe sounds very different than the bulbar cases I've heard about and read about. Excuse me if I don't describe a proper ALS swallowing symptom, as giving details tend to harm the hypochondriacs who frequent this area. Your neuro can explain.

 

[lgelb]

Let's assume for the sake of argument that it's reflux, maybe with allergies and/or a bit of anxiety thrown in. Things to try:

Daily antihistamine like fexofenadine (not Benadryl!)

Warm/hot liquids before you begin to eat, during, after

Buy an oximeter and see if your pulse is affected by eating -- if so, slow down

Papaya or pineapple juice or chewable tablets

Monitor symptoms vs. caffeine, stress, sleep, exercise, hydration

Go soft foods for a few days to rest your throat

Stay away from smoke of all kinds

Trial of a nasal saline spray or nasal steroid to reduce any dried mucus that is "sticking"

Humidifier esp. when you sleep

Meditation, tai chi, massage, hot tub, night out

Best,
Laurie

 

[Jclay]

Thank you for the advice! I had my appointment today with my neurologist and he said he feels as though the swallowing issues are muscular and has referred me to a neuromuscular specialist. I am not sure what to expect and am a bit nervous. In the meantime, I will follow the advice given! Thank you, again!