Worried about bulbar

[worriedPaul]

Hi all,

I want to start this by saying that my heart goes out to everyone suffering from this terrible disease. Its incredibly kind of you all to reply to threads like mine to help reassure others.

I’m a 25 year old white male. About 2 months ago, I noticed some twitching and cramping in my calves. I was immediately worried about als. I saw a neurologist about a month later who did a clinical exam and emg on several muscles in my legs and one in my lower back. Everything from the clinical and emg was clean, so he wasn’t concerned about als at all. I dont have the emg report, but there were only numbers in the left most column.

The emg was about a month ago, but since then I’ve been having some symptoms that have me worried about a bulbar onset:

• jaw soreness after talking
• Frequently have a gurgle/noise in my throat a few seconds after drinking
• An urge to clear my throat after drinking
• Internal tremors and shaking at night, most notably in my chest, back, and jaw

I saw an ENT for the swallowing issues. He didn’t see anything concerning with the scope through my nose, but scheduled me for a barium swallow in early October.

The internal shaking is what I’m most concerned about since I’ve seen a couple threads with PALS saying they experienced something similar early on. I only notice it when I wake up from sleep in the middle of the night or morning. I mostly notice it in my jaw, back, or chest but it’s also happens in my arms and legs less frequently. I’m worried that the jaw shakiness is clonus, but it doesn’t happen when I’m awake so I’m not sure.

What do you all think? Do these sound like als symptoms? I’m very worried about the internal shaking, but haven’t had any tongue or speech problems which I guess is a good sign.

Thanks to anyone taking the time to respond.
Paul

 

[affected]

I'm glad to say internal shaking is not an ALS symptom.

If you feel you develop new symptoms you need to return to your doctor.
You have been cleared of ALS, so we can't help as no way can we tell anything from a text description.
The EMG would have shown ALS a month ago, and your dot point list are not ALS symptoms.
The MBS will hopefully put you at ease and is coming up soon.

Try reading this if you need more depth to what I'm saying.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

 

[worriedPaul]

Thanks affected, appreciate your reply. Does it matter if the shaking/tremor isn’t always internal? Sometimes I can feel it if I hold my hands to my chest even if I can’t see any movement.

 

[lgelb]

Internal shaking is not a sign of ALS. Stop reading and keep living as others here cannot.

 

[affected]

Paul I can assure you that if there was a difference with where the tremors are I would have said. Can you see that you are ignoring the facts and looking for a way to make what is happening to you fit?
Hopefully your took lgelbs advice and have stopped reading, but in case you just couldn't help come back again.
No.

 

[worriedPaul]

Hi again,

I appreciate the earlier replies, they were very helpful. Most of what I was worried about earlier has subsided, which was relieving.

The one thing I still have is a gurgle noise in my throat after drinking water or other thin liquids. I don’t think it happens every time but it might. My speech hasn't changed at all, but I do seem to lose my voice fairly easily (like after speaking in a loud environment for an extended period).

Is the gurgle noise similar to the swallowing issues experienced with ALS? I don’t choke on the liquid and the swallow goes down fine, but I’m worried the gurgle is related to the muscles not working properly.

I don’t think its anxiety related since I’m on lexapro and it has really helped. I don’t feel that anxious anymore (except for right now), but the gurgle keeps happening.

Appreciate any input.

 

[ShiftKicker]

Hi Paul-

I gather you are scheduled for a barium swallow test shortly. This should provide you and your doctors more information and reassurance than anything the people here can provide you. While I am sure it is hard to wait, this is what you must do, as speculation and surveying strangers about their ALS symptoms will only add to your frustration and anxiety.

Please let us know how your appointment goes. Take care

 

[affected]

I'm so glad to hear that so much has subsided, this is great news!

The barium swallow will really tell you everything you need to know about gurgling in the throat - whether it happens during the study or not. My husband died from bulbar onset ALS and never once did his throat gurgle.

As advised, please don't keep coming here and reading and posting any more. Have the barium study, discuss the results with your doctor, then come and let us know the outcome once both those things are done.
There are loads of options that sit in between ALS and Anxiety. Let the doctors do their job now.

 

[worriedPaul]

Hi again,

Thank you again for your previous replies. I had a barium swallow done on 10/7 and the radiologist performing it said it was a normal esophagram. I asked if the muscles all looked fine and she said something like “everything looked like it was squeezing properly”

Obviously I was super glad to hear that and have been feeling really good. However, yesterday I noticed what I assume was slight nasal regurgitation. When I took a sip of my coffee i felt a little in my nose. It definitely happened at least once today with a beer. Potentially 2 more times with water after that but Im not positive about those.

I know this could point to issues with that soft palate, but the notes from the barium swallow said my soft palate had normal movement during swallows. It also looks to rise eventually when I look in the mirror.

I have a coupe questions:

1) does this sound like actual nasal regurgitation?

2) could the swallow issues have progressed to my soft palate in the 2 weeks since the barium swallow was done? Or would it not progress that quickly?

I have a follow up with my ENT on Friday and Im going to mention this then as well.

As always, thank you all very much for your time.

 

[affected]

Do mention it to your ENT as someone who can examine you, and go over your results in person will hopefully reassure you.
Honestly, ALS does not happen this way. I don't know how you know what these things can point to, but if it is through google surfing, please stop and let your doctors do their job.

Answers
1. how can we tell? You say you experienced it, now you ask us if that is what it was. Let me tell you this, my husbands first symptoms like this was: take a sip of water, spray it across the room. No 'nasal regurgitation'.
2. nope, if you had bulbar issues it would have been seen. you were complaining of bulbar issues well before the MBS, now you ask can they start after. It does sound like you are becoming so hyper-vigilant you are going to notice and think the worst of every tiny thing.

Let us know what your ENT says, follow what they say is next, and I hope you return to full health soon. Things are looking really good for you.