New here and looking for advice - bulbar worries and other symptoms

[Thankyou]

Hello folks

If I may, can I ask that you indulge me for a few moments.

First of all, the information I have gleaned from this forum has been valuable, worrying at times, reassuring at others, but overall very helpful so thank you all for your various contributions.

I have also read the very informative sticky. Having done all of this I just have a few lingering things on my mind, accompanied needless to say, by some anxiety.

I won't go on and on past this post, as I know time is precious and hard to come by these days. Just to be clear I have no intention of constantly poking people for answers. The doctors can give me those, but what I am after is advice based on experience.

So without further adieu - my history and symptoms (perceived or otherwise) and other information

- For a good couple of years I have had throat clearing issues, which I have largely never given a second thought and in fact put down to the bad habit of cigarettes. Albeit I only partake in 2-3 a day.
- More recently, over the past 9 months or so, I have developed swallowing issues. I have no problem with liquids, soups, pasta, rice, cereals, most fruit or veg. Red meat and dry bread however are my nemesis. I do still try to eat these things, but it takes me an aweful long time. Sometimes I am literally unable to engage my swallow reflex ie. Nothing happens, unless it's a pulp... And to be honest, unless we're all eating A grade wagyu beef, a pulp is hard to achieve, so I steer clear of meat where I can.
- Someone on here once referred to food snooker ie. Eating one food at the same time as another to get the more difficult food down. Great analogy and exactly what I need to do with meat.
- I have for a long time had a fear of choking, and I wonder whether this has become more paycological than than physical. It does feel physical but I'm no expert.
- I have noticed twitching on my tongue, or little fasciculations as I believe they are called. I don't see them when my tongue is at rest in my mouth, but they are quite clear when tongue is extended just outside of my lips. I understand that the gold standard of examining the tongue is at rest and in the mouth, so I'm not super concerned by that, but it's still a contributing factor.
- I can move my tongue freely side to side, up, down, around and make all the weird tongue shapes that I've always been able to make. My tongue does get quite tired though while eating.
- I do get muscle spasm/ticks and flutters in various random parts of my body, they are infrequent, and are also not a huge concern to me, but again add to the overall equation.
- I have no notable muscle weakness per Se, but do from time to time perceive weakness or heavyness. I have largely put this down to stress and general fatigue however, but any thoughts welcome.
- speaking of fatigue, I feel as though my muscles fatigue easily doing simple chores. Folding the washing, doing my hair in the morning (male vanity I suppose), holding my phone to my ear for more than a few mins, walking up a flight of stairs etc. could be a fitness issue?
- I have some shortness of breath, again which I have put down to average physical fitness and lack of excercise plus the smoking.
- I also grind my teeth at night (bruxism I think they call it) which would clearly put some pressure on my jaw and salivary glands - not to mention my poor worn down teeth. Ive read that this can be a TMJ? issue, which in turn can impact swallowing. I do get loud clicking I that TMJ area if I open my jaw wide and move side to side.
- Last but not least, is indeed this damned saliva issue. I feel like someone forgot to turn the tap of up there somewhere. It's only on my right side, and it's persistent. Sometime I feel like it just sits in the corner of my mouth, and I have to swallow to eliminate it. Again, from what I read this is not necessarily symptomatic. I just started giving magnesium a try, apparently magnesium deficiency can have an impact on saliva. Who knows if I'm deficient, just giving it a try.

So there you have it, the range of things that are bothering me, some of which have invariably led me to this forum and your community.

You will be pleased to know that I am booked to visit the ENT in 2 weeks. Perhaps some answers will come from this.

I hope some of you might take the time to respond, but of course absolutely no pressure.

Clearly there are people here with bigger fish to fry than myself, and I find it really amazing and quite special the degree of support many of you are prepared to offer to interested (and anxious) people like myself - so on that note THANK YOU.

Take care everyone, and may you have all the strength to get through your adversities, whether you are diagnosed, or anxious or otherwise.

Thanks again and all the very best.

 

[Atsugi]

Hi, TY. Thanks for the details.


Fortunately, you didn’t build a strong case for ALS. No notable muscle weakness is a good sign. Fatigue is not something that indicates ALS at all. The saliva issue may be something simple.



The ENT may want to do a swallowing study. You say you have no problems with liquids. That might be a good sign that you’re not looking at ALS. People with bulbar ALS complain that they have the most difficult time with thin liquids.


Between now and your appointment, I don’t think you need to be worrying about ALS.

 

[FamilialALS?]

My mom who is bulbar onset had progressive speech changes. Swallowing problems came much later, and saliva management problems much farther after that. Speech changes as in her words were so slurred she sounded like she was drunk ALL the time- but she has never been a drinker. Doesn't sound like ALS is your ailment, hopefully you will get some insight from your ENT.

 

[affected]

If you aren't happy with what the ENT finds, go see a speech pathologist as they are the ones who will order a barium swallow test in Australia if they think it is warranted.

They are amazing at recognising true speech or swallowing issues. ENT's don't tend to have much experience in that side of things at all.

 

[Thankyou]

Thanks everyone for the feedback, really helpful and much appreciated.

I certainly go through moments where I ask myself why I'm even contemplating it could be ALS/MND.

Anxiety and worry can be horrible, and can really heighten the perception that something is seriously wrong.

For example I've never once considered if there are changes in my speech, yet today I was listening out intently for it, and of course the inevitable occurs, and i notice I jumble a word every so often and trip over phrases and sentences.

When I finally take that moment to contemplate why on earth I'm constantly examining myself, and call myself out on it, it seems almost as if the so called symptoms can wash away.

Don't get me wrong, I'm still worried for all the reasons I mentioned above. But equally I know that worry and anxiety can drive one to the brink of whatever we choose to believe may be true, and manifest itself accordingly.

Notwithstanding the worry, I do have some kind of swallowing and throat related problem going on, hopefully I'll get to the bottom of that and move on.

THANKYOU

 

[affected]

Jumbling words and stumbling over phrases is not something you see in bulbar onset mate.

This is the problem with people searching online and trying to self diagnose. I've never heard speech issues like bulbar issues except in PALS with bulbar symptoms. I've heard lots of types of speech issues.

I am a terrible one for jumbling words and stumbling over phrases at times.

My best one was in a classroom one day, instead of saying the flashing cursor on the screen I said the cursing flasher. Got everyone's attention that's for sure!

 

[Thankyou]

Thanks Tillie, absolutely I agree, I know these speech things are not related to ALS in any way at all. And I suppose what I was intending to say was that sometimes our mind (as brilliant as it can be) can be an absolute jerk, and try to shoehorn a perception in to a reality - square peg, round hole or so to speak. BTW You're really lucky I didn't happen to be in your classroom by the way, being the class clown I was at times, I wouldn't have let your flasher mishap go away quietly! Cheers and all the best.

 

[Thankyou]

Just one last thing Tillie / Atsugi. Yesterday I began feeling like I was developing a chest infection, no other cold/flu related symptoms. I am however coughing up yellow coloured gunk (technical term). I wonder if this is an aspiration type issue due the swallowing. While I was eating I don't think I felt anything go down the wrong way, but for the remainder of the day, had the throat clearing problem. Do you think this could be a product of the swallowing issue, and more specifically a bulbar issue, so early in my investigations. It just feels a little coincidental to me that this would happen so quickly. No further questions, but thank you. Of course I will also raise this with the ENT.

 

[affected]

Fair go mate, really.

Please understand, this is a site for people who are dying or looking after people who are dying. We have to spend our energy on those people.

You have asked, and we have done our best to go through all the things you are reporting and you are just not showing symptoms of ALS (or as we call it MND). Not even remotely.

It's a big red flag of health anxiety that you keep coming back trying to add more evidence to us, when you are just trying to guess what these medical terms mean in reality.

I truly hope the ENT finds an answer. If you aren't happy with the result of that visit, get to a speech pathologist stating you are having swallowing issues (our health system covers hospital speechies to see you in that case.)

Until you get through seeing the ENT at the least, you need to do yourself a real favour and stay offline and especially away from here.

Truly, you need to make the most of today, none of us knows what tomorrow may bring.

I sincerely wish you the best in finding what is going on and getting that treated.

 

[Thankyou]

Roger that, you are right the anxiety is a problem, and no I know nothing about this. Sorry, I mean no offence or to take you or anyone else away from more important work. I did say it was the last question, and I mean that. Apologies and all the best.

 

[Thankyou]

And also, thanks for the kick up the backside... Seriously, I clearly needed one.