Dysphagia,Lip Tremors, Bulbar onset?

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jmendozd90

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Country
MX
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Mexico
Hello!! I’m really concerned I hope you can help me with your thoughts. I’m 28 years old. I started to have dysphagia in 2016; it hasn’t progressed … I just feel that when I eat solid food, some pieces get stuck in the throat, so I have to swallow twice in order to get things down. I don’t choke. I don’t have problems with liquids. I don’t have problems with saliva; but I have to clear my throat several times during certain times (Not all day). Sometimes I have hoarseness in my voice.

I had a nose job on May 2018. I noticed that I couldn’t make a facial expression like if I were smelling something without having tremors on that zone. I thought that It was because of the surgery. On July I had a chin surgery (aesthetic) But this month, I noticed something else. When I try to fill my cheeks with air, my lips won’t stop to have tremors. My upper lip seems to be having an earthquake. Nevertheless, I can keep the air inside; my cheeks are strong; no air escaping from the nose. Just that worrying tremor that makes me think my lips are getting weak or cranial nerve damage.

I also have tongue twitches sometimes; I can feel them, and when I open my mouth I can see them in the mirror, but they disappear after 3 o 4 twitches. I have widespread fasciculations in my body, but I always have had them since child; so that doesn’t scare me. I don’t have weakness nor atrophy. I’m scared I have bulbar onset. What do you think? My ALS fears came back because last Friday I felt a different dysphagia, a little more severe and since then, I can’t stop thinking on ALS, I don’t want to eat because I don’t want to feel the dysphagia.

Thank you so much!!
 
In all likelihood you do not have ALS as it's a rare disease. Given your other recent medical experiences you should follow up with a doctor immediately.

Best advice, go see a doctor and voice your concerns. If a professional thinks further testing is necessary they'll lead you down the right path for diagnosis, or shed light on what else may be troubling you.
 
There could be nerve damage associated with one or both procedures. Surgery is a trauma and so there may be improvement later. But regardless, I would seek another consultation with the surgeon and s/he may want further testing. But I don't see ALS in this.

I doubt your dysphagia with onset 3y ago is related. But anxiety generally can make something like that worse. You should not stop eating because that will only make you weaker. Adapt your diet with as much liquid after or moisture in your foods if need be; a dietician can help, and there are many good online resources for people who have difficulty with swallowing.

Best,
Laurie
 
Thank you!

Two more question.

Could I order an EMG of those zones of my face?
If it were ALS, will the EMG show it?

Thank you!
 
I doubt anyone will want to do an EMG on your face, and I doubt you would like it much if they did. The surgeon will ask you to make certain movements, to assess how well the nerves are working, which is the main thing.

ALS doesn't show up in the face first, nor in the way you describe.
 
Hello! I'm back .... I went to a neurologist, the best neurologist in Mexico speaking about ALS. He checked my cranial nerves and he said everything was fine, he said I don't have ALS, that my symptoms were all in my mind. I had a clear videofluoroscopy; but it was weird because the technician who was performing the test, saw something about my dysphagia, he could see I was struggling. But after a few hours, the hospital said there was nothing wrong with my swallowing. I'm really scared. Swallowing is not getting better; actually it seems it is worsening.

Yesterday I performed a swallow technique I saw on internet, chin-tuck, while eating croutons. A few months ago, croutons used to stuck in my throat but not severely. Yesterday, every swallow was bad, and every piece got stuck in my throat. But with that technique, swallow was good, no problems with croutons. That really scared me because according to internet, if that technique works, then that could mean that I have a delayment in the swallow reflex that is being repaired with that chin-tuck. Pureed food got stuck. I don't choke with food nor liquids; but after drinking liquids I keep clearing my throat. My mouth keeps shaking after I put my lips like if I were going to kiss. Tongue twitches are now being more frequent, I can feel them and I can see them at rest (they are sporadic, though they are not like worms, just a piece of tongue).

I really want to have an EMG of that zone. On friday, I have an appointment with a otoralyngololgist, he is going to perform a swallowing study; he will insert a camera through my nose so he can see my vocal cords, etc.
I'm going to ask for an Emg of all these muscles: Genioglossus muscle, sternocleidomastoid muscle, masseter muscle, mentalis muscle, orbicularis oris muscle. Do you think if I had bulbar onset, an EMG of those areas will show some damage?

Thank you all... I'm sorry to bother you. I'm just so scared. Mexico is not a great country for ALS patients.
 
The fact that the best neuromuscular neurologist in your country said you are fine and what a tech said or how you eat croutons are not equally valid pieces of evidence, I assure you. If you are going to have the Internet diagnose you, why see a physician?

If the swallowing test is normal or shows a condition that is not related to nerve damage, that should suggest to you that seeking a painful unnecessary EMG is not the answer. Diet, sleep, hydration and activities far removed from the Internet are all good ideas to work on, that can quite possibly improve how you feel.

I'm very sorry for the ALS patients in Mexico if the resources are not good, but you have not described any reason for us to believe you are an ALS patient.
 
Hello Everybody! And thanks for your answers. I'm worried. A new symptom has appeared and it is concerning me; this is not my imagination nor anxiety. Now, when I eat crumbly foods (like cookies, bread/cake) 2-3 seconds after swallowing, when I speak some pieces of food make my voice to crack (my voice is silenced), so I have to swallow liquids so I can be able to speak clearly again. It happens when I drink liquids that contain powder. I strongly believe that after swallowing, some pieces get stuck in my vallecula or pyriform sinus and when inhaling, as my voice box is opened, the pieces of food falls into the upper airway/vocal chords and make me to be not able to speak and it is cleared after drinking liquids. I still don't choke, liquids are okay. This is new, this never happened to me before and it has been three weeks since I began to have this scary symptom.
Summary.
- Food gets stuck in throat. No choking, no problems with liquids.
- Voice cracks with crumbly foods and with liquids that contain powder (like MILK WITH NESQUIK POWDER)
- I have to clear my throat after drinking liquids, no exceptions.
- Tongue fasciculations that I can feel and sometimes I can see if I'm fast enough to find a mirror. I have them daily but not in the whole tongue, just in some zones (not all day though). They don't look like a bag of worms. I can move my tongue anywhere and fast. Sometimes I can't speak as fast as before, but that could be anxiety. Sometimes I have problems with guttural words (GAH, GAH, HA, HA)
- Mouth tremor when smiling or when filling cheeks with air.
- My Uvula is crooked, but it rises symetrically when saying AH AH AH.

I went to an otorhinolaryngologist and he performed a F.E.E.S. He found nothing neurological. He didn't find food getting stuck. Although I swallowed in small quantities, yogurt, cake and cookies. The study had a duration of 8 minutes, I'm not sure if that was enough to find something. Nevertheless, he said that some food remained in the valleculae, but he said it was normal, which I don't think so because that never happened to me before.

Do you have any thoughts?
 
Hi,

You went to the best neurologist in Mexico and you didn't believe them when they said "No ALS", despite getting an EMG and being cleared. You've now also visited another specialist who has said nothing neurological is causing your symptoms. I don't think you will find anyone here who will disagree with them. You indicate you don't think they did their jobs well because they didn't find what you thought they should find. Instead of believing two specialists who have years of medical training behind them, you have come to an internet forum to ask again. Strangers on the internet will not convince you if you won't believe medical specialists.

While you have been cleared of ALS, there may be something that is treatable causing you problems. Speak with your doctor about what your next steps are. You have explored the possibility of ALS and have been cleared. It is time to move on from it.
 
Hello again. In méxico, there are not experts in Modified Barium Swallow studies, I knew something was going on with my swallowing, so I came to the USA, and I asked for an MBSS. An ENT from Texas gave me the medical order and I went to Diagnostex in Hurst, Tx. The expert performed the study. After finishing, she said my swallow was really good. Nevertheless, she found mild weakness in the base of tongue, pharynx wall and epiglottis. But she said that she wasn’t worried about it, she said she didn’t find ALS signs. But, she was worried about my tremor in my mouth when filling my cheeks with air. She suggested a neurologist. Although she said my swallow wasn’t worrying, For me it is very very concerning. I have read many cases of people starting with weakness of those areas. Any comments ? Does someone know if there is any other illness that has mild weakness in those areas as a symptom ? Thank you so much.
 
Honestly you need to stop chasing this with us. You get cleared but you never believe it. We can't help you.
 
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