worried about bulbar

[chikito]

Hello,

I'm sorry to disturb you but I have been worried for a while and I had to ask..

I'm a 34yo male and for 1 month I have problem for swallowing.
I have problem propulsing the food into my throat. It's like when I put the food in the back of my mouth, the deglutition reflex is blocked and I panick. It always finish to work but after some times, and I have to think about it for it to work. I take a lot of time chewing and don't know when to initiate the movement because I have the feeling it won't work.

I also have muscular contraction, spasms in my tongue. It comes and go but yesterday it happened all day. It also happens in the neck (above the chin) and above my mouth.

My breathing is also not so good as I sometimes have short breath even when I'm doing nothing.

I have no problem with liquids at all. I've never chocked. Once the movement is initiated, it works perfectly. I don't feel that my tongue is weak and I don't think I have blurred speech.


I've seen a doctor and an ENT specialist which didn't find anything particular with the nerves examination. My doctor gave me xanax and will ask for a scanner if nothing is better in 2 weeks.

Should I be worried or am I just being paranoid?

Thanks for the time you'll take responding me

 

[Atsugi]

This does not seem to be typical bulbar ALS. I am not a doctor.

Typically, in ALS, it doesn't matter how hard you think about it. It still will not work. It can't.

 

[chikito]

Thank you very much for your answer.

I'll try to be more precise.

Regarding my swallowing difficulties, it starts when i tried to eat a pizza. I have propulsed the food in the back of my mouth, it went behind the uvula and the swallowing phase didn't start. It had me worried a lot (because it was in my throat like floating) but at the end it has finally worked normally. This things has repeated 3 times before I started to worry a lot when eating. The night it happened, when I was trying to sleep, my tongue started to shake. It was very tense, like muscular contractions and it couldn't stop. This symptom in particular disappeared completly for about 2 weeks before starting back with the same thing happening in the region near my chin (below and next to it).

The problem I have when I eat is like I don't really know what to do with my food when it's in my mouth. and when I finally decide to swallow, sometimes it's ok, sometimes it feels like something is paralyzed for a bit but will start eventually. After it happens, it will happen everytime so I stop eating.

I'm not feeding well globally and I can't know if this is because of a condition or just anxiety. Nevertheless, it also seems like I forgot how to eat...

 

[chikito]

Hello,

I'm sorry to come here ask more questions. But it's been 2 months now since my symptoms appear and I still have no clue what I have (if I have something)

I've lost a lot of weight (about 12%) because I can simply not eat. I had to tell my mom about it. She's in the medical business so she knows peoples. I saw 2 different doctors, I had an MRI last friday which came clear. I will be in the hospital next week to see a neurologist and have a lot of tests (blood, thyroid, oeasopheagus). I asked for EMG but doctors say it's not necessary and difficult to do in the mouth area.

I come to you today because it's been more and more difficult to eat. I now only eat things that can be dissolved in the saliva (like kinder bueno or rusk with Philadelphia type cheese). That's the only things I'm confident putting in my mouth.

Normally I didn't have any issues with yogurt. I could simply eat it in one movement and very fast, but tonight it wasn't possible anymore. And I had to deal with it the same way I do with other kind of food. That concerned me a lot because that was one of the last thing with water I could deal with like I did before.

I think it is because I feel my soft palate and pharynx are very tense. I heard the word spasticity (I'm not an native English speaker but that's the language where there is the more info on this disease). And I'm not sure if it's what I've got. I can still move them but I feel them really tense. I think this is one of the reason it has become now more difficult to eat than in the beginning.

I can drink water, no problem but more dense liquid like soup is more difficult and I cannot eat it in one single movement.

The main issue remains that I have a hard time initiating the deglutition movement. The coordination between the moment I start the swallow and the time the deglutition begins.

The spasms in my tongue and above the mouth disappeared completely after I start Lexomil but other symptoms remain.
I still see no fasciculations in my tongue nor I feel my tongue weak or any other part of my mouth or throat. I have still no speech issue. But I still have sometimes hard time to breath even when I'm not stressed. It's like my breathing is ineffective.

Sometimes I just think I simply forgot how to eat so my coordination is not good which cause me the symptoms , but if I force myself to swallow in one single movement it will simply not work correctly. Either there will be a delay in the deglutition movement and the food will be in the middle of my throat before it starts or it will be just be blocked in my mouth and I have to force the deglutition to make it work.

I can still put food intentionnaly in the back of my mouth, feel it on my soft palate, pause, and then swallow and it will work that way.

Anyway, I think I've said enough. Am I really paranoid to think about this awful disease? Are 2 months a long period of time and would it normally have started to spread on other things than dysphagia?

My doctors want to rule everything out before saying it's only psychosomatic but they seem to exclude ALS and don't want to have me pass an EMG.

I'm grateful for this forum as I think it's the only place I can really find answers. The doctors are fine but it's a very slow process and sometimes I need other answers.

Thanks for reading