Bulbar On Set

[cathibikes]

Good Morning,

I do realize this is only advice and experience. I do have a barium swallow test scheduled and neurology appointment (not until January 2025).

My doctor is dismissing my symptoms as allergies.
Swallowing water - abruptly stated one evening where I inhaled water into my lungs. Since then, drinking water can be difficult. Morning I tend to be find, but by the time evening comes the difficulty presents itself. I can tell when it is going to be a problem.
Facial twitching starting this week. The area where the twitching started is still noticeable but no longer twitching.

I don't think there are any changes to my speech. I am running and biking like normal with no fatigue.

Since my appointments are so far out... this is a long time to go without having any sense of what is happening.

Thoughts? I know Bulbar ALS presents differently, but this seems so similiar.

 

[ShiftKicker]

Hi Cathi-

Your profile indicates a diagnosis of UMND/PLS? Does this mean you have already been diagnosed, or are you wondering if this is what you have? If you could clarify please. We might be able to help a bit more if we understood what your current status is.

 

[cathibikes]

Hi. My sincere apologies. Nothing has been diagnosed at all. Truthfully I thought that meant undiagnosed.

As mentioned previously. I can drink water pretty well during the date but with difficulty and some aspiration at night, but I can kind of tell when it can happen. Food hasn't been an issue. I think my speech is fine. I had an amazing facial muscle twitch yesterday which is why I am here.

I have no fatigue or aches (my knees hurt but am certain this from my sciatica/running). No shortness of any during exercise. I rode my bike very well this morning and drank water with no problem.

So odd....

Thank you for your time.

 

[Nikki J]

I have edited your profile to reflect your true status

 

[ShiftKicker]

Thank you for clarifying- that's helpful info and helps people here tailor responses.

Have you read the Read Before Posting post? It contains answers to many of the questions that bring people here. Twitching absent weakness points away from ALS/MND. It sounds as though your doctor did not see anything super concerning or the ENT appointment would have been expedited.

Have you received any advice from your doctor about what to do about allergies? It's reasonable to address your issues assuming it's allergies of some sort. If you do not respond to treatment after a period of time, then would be the time to explore other issues.

Take care