Ughh!! Bulbar onset ALS!! Why???

[AnxiousJamie]

Hey everyone. First of all, I’ve read all of the bulbar als topics on here to try to get some clarity before I posted. I have never been worried about ALS. Until now!! About 3 weeks ago I started realizing that through out the day I was yawning a lot, no matter how much I slept the night before. I began focusing on that and of course the yawning increased. I was thinking possible brain tumor until I read a research paper on yawning as presenting symptom of bulbar onset als.

Around the time I read that, I realized that I had had two days where I penetrated water while drinking. (The feeling of water going down the wrong pipe). This has happened at least once a day since then. Yesterday it happened 3 times. I’m starting to spiral thinking about the possibility that I’m losing swallow function. The bad part is that I’m a medical speech pathologist and I work on disordered swallows everyday. I completely understand the swallowing mechanism and know exactly what my issue is but I just do not know what’s cAusing it all of a sudden. Of course I think it’s ALS. Please someone give me clarity. First the yawning and now the swallowing issue. I’ve read that als is failure not feeling. And I actually do think my swallow is failing.

[axolotl]

You're worrying about a very rare version of a very rare disease. And I doubt people with this um and ah about whether their swallowing's failing... they can't swallow.

I have a book on HA, and not being able to swallow properly when you're thinking too hard about swallowing is literally an example in there.

What are you doing about your HA? I'm afraid posting on here for reassurance may temporarily get some logic in you but won't help you recover in the long term.

until I read a research paper on yawning as presenting symptom of bulbar onset als.

Are you a medical professional then? Because only a medical professional has a chance of understanding and assessing a medical research paper.

[AnxiousJamie]

Thanks for your response. I am a medical professional and I do know how to read research. I have online access for peer reviewed articles that most people don’t have bc of my job. It’s a catch 22. I need to be able to have access to this research but sometimes it’s detrimental to my mental health.


I do see a psychiatrist and am medicated. I have been for years. I am also seeing a therapist and for the most part my anxiety is under control. But I have breakthrough anxiety every now and then. It’s teally so annoying. Thanks again for your response.

[axolotl]

Sorry if the last bit sounded patronising, most people on the forum (including me!) have a habit of trying to decipher medical tomes far beyond their comprehension...

I'm probably teaching you to suck eggs a bit with that last post then... but just a note from a fellow recoverer that there are blips and relapses and we can get through them. But yes, it is really annoying.

[AnxiousJamie]

You were not patronizing. I need tough love. I would love to be recovered. I have a habit of catastrophic thinking and it amazing me that after I get over a specific illness, it seems so silly. But right now, it seems very real to me. I honestly feel like I could have this.

[jojo2316]

Do you think the problem is hyper attention? You started yawning, and that made you think of ALS, so you began noticing the act of swallowing..... something which happens best when NOT noticed! Having been in the same position with the same worry I know that what follows is awkward swallowing.

[Carys]

I absolutely think it could be hyper attention and sensitivity to a particular action of the body, causing this.
For example, many people have trouble with breathing with anxiety, once they become aware of it and think they can't breath right....they feel like they are having to 'make themselves breathe' and forcing breathes and feeling breathless. This is an automatic body thing, breathing, and we aren't intended to become aware of it and over sensitised to it. Once they are asleep and not thinking about it, the breathing just continues as it should.

The same applies to swallowing. You don't usually think about it, your body just does it, BUTTTTTTttt if you are incredibly anxious and have a normal minor choking moment (you know a bit of water accidentally goes the wrong way) then you are hyper aware and vigilant. You try and bring swallowing under your physical and mental control, rather than allowing it to be automatic, and before you know it you are coughing and spluttering again.

Swallowing problems are of course part of ALS/MND for many people, BUT, they don't come on that quickly and there are other minor symptoms too which occur at a similar time not just related to the throat. I'm not going to tell you what they are, but you've not mentioned them in your posts. Unforunately, as you are involved in this research/medical field.....voila....your focus is even worse than the averaage person .

[Fishmanpa]

Please read THIS. Especially the section on Bulbar onset.

Positive thoughts

[Carys]

Good link. ANDddddddd.....yes......the bit about swallowing and the speech, mouth changes and so were the things I was referring to. My father has ALS and has done for 10 years, I watched him develop dyspahgia and there were subtle additional changes to 'water going down the wrong way'.

[Catherine S]

I'm assuming...as this is your field of expertise...that you know the signs of ALS in your patients when examining them? Presumably you wouldn't refer too many of them for ALS assessments, since you as the medical professional would know the difference between something benign and something that would need further investigation. Can you not apply that to rationalise your own symptoms?

I'm often surprised by how many medical professionals there are here with health anxiety, is it that you're full of the knowledge of these diseases and exposed to all the bad stuff so much that your mind can play tricks? They say ignorance is bliss....I think they could be right!