I feel alone, scared and helpless. Face twitching and dysphagia. Help me?

[JohnReid]

Hello, i apologize for my bad english. i'm a 30 y.o man from italy.

i've always had problems with junk food, i ate this kind of food every day. everything considered "cancerogenic" (red meat, chips ecc) and maybe because of this, i did something to my body. GERD and IBS are living with me since years already, with all the consequences (chronic diarrhea, insufficent, esophageal insufficent motility ecc).

2 years ago i started to feel weakness, fatigue, and always sleepy. especially my legs, they feel heavy and tired. after a bath, i started to feel a burning skin sensation on my right leg, like acid on the skin. some months later my entire body started to twitch, especially in legs and arms. i started to see a lot of doctors, they did EMG, MRI, but nothing never came out. just hyperreflexia. docs say i have fybromyalgia. i'm still living with the burning sesation, fatigue and muscle twitching because i refused to take anti-depressant..

i always had difficulties when eating (feeling of food stuck in throat) but i always thought it was an effect of GERD. But 1 month ago a new symptom started, and it scared me so much. i realized swallowing food became harder, more diffcult, and one week later, every time i drank water an horrible spasm happened in my throat, it wasn't laryngospasm because i still could breath, it felt like everytime water run down my throat created a spasm-ostacle, closing, twitching and leaving a bad feeling after i swallowed, like someone is pushing down my adam's apple. this is the feeling i still have today, the spasm or obstacle sensation is almost gone (maybe it will be back.. i hope not) but every time my throat works, food or water, after swallowing i feel this suffocating pressing feeling, and it stays. i feel it even when speaking, like i have to spend more air to speak because something is obstaculating. (crycofaringeal spasm?) after eating i feel food stuck in throat.

i went to the hospital, they made some exams on me. another EMG (negative), swallow check with a camera in my nose, neurologist visit ok, esophageal manometry saw absent esophageal peristalsis.

Now i'm back home and a new symptom came out. twitching all over my body started 2 years ago but now i got also the twitching of my chin, twitching up and down my lips, and a feeling of pulling/pushing the right muscle/nerve around my mouth, starting from the right cheek to down my chin, twitching included. and i noticed that saliva is more present in the corner of my lip on that side. i did the EMG 10 days ago, they checked my arms and legs (not face district).

Do i have to repeat the emg beacuse of this new face symptoms? I'm afraid to have ALS.. and i make the mistake of reading experiences on the internet. a lot of people started to have early symptoms like mine.. I know you said "you need to have slurred speech before all of this" but i've read a lot of bulbar on set without slurred speech as first symptom, but only dysphagia and face/body twitching. i know the burning feeling of my leg is not related, i'm just afraid that something is happening now.

I'm paying a lot of money to see doctors (not easy for me) but i feel like they don't understand me, or they don't want to, it's more easy to say "it's just stress" for them. my parents don't understand.. i feel alone and hopeless. i lost faith in doctors.. i don't know what to do. dysphagia, facial twitching and pulling right face feeling, fatigue, stomach stopped working,.. i'm so afraid of ALS, and i feel lost in this country. Any advice would be appreciated.. Do i have to repeat the EMG or go to the neurologist again?

 

[ShiftKicker]

Hi there-

Please read the Read Before Posting link. It answers many of the questions that bring people to this forum.

We do ask that people format their posts with paragraphs, as it makes it very hard to read if it's just a big wall of text without any breaks.

You have received a diagnosis of fibromyalgia. Your symptoms, which include sensory issues, are all included in that condition. If you are experiencing new symptoms, a doctor is where you must start, as the people here would not argue with your diagnosis. Particularly as you have had an EMG that has cleared you of ALS already. I am sorry you have lost faith in your doctors, however this forum can't replace actual medical attention.

Please take care

 

[JohnReid]

I’m sorry I’ll pay attention next time I’ll write something.
Do you think an EMG done 10 days ago, before the face numbness twitching, and done only to arms and legs, can exclude ALS bulbar?

 

[Bestfriends14]

ALS doesn't present with face numbness, so your question is moot. The EMG in your case, was more than sufficient.

Good luck to you.

 

[JohnReid]

I know that ALS doesn't present with sensory problems, i wrote that already. all i'm saying is i may have two different things, combined. I could have fybromyalgia, but now i can have a beginning of als.. that's what i'm scared of.

Let's focus on the twitching in the face and all over my body, and the difficulty swallowing with spams to liquid and food stuck in the throat feeling, and the pain to have something wrong in your throat (like an infection feeling, but no infection) even when i'm relaxed. i feel discomfort not only when swallowing or eating, i feel something's wrong even when i'm relaxed, like a constriction, tightness.

i'm afraid of bulbar als. All i'm asking you is, could the EMG i've done be a false negative because i did it too early? they only tested arms and legs. i did the emg after 1 month of dysphagia. And the twitching and all started After the emg, like 1 week later.

 

[Bestfriends14]

You have no symptoms of ALS and your EMG showed no signs of it either. Therefore, you really should move on from this fear. Why not take this as good news instead of trying to find reasons to argue when everything points away from ALS?

You've read the "Read before posting" sticky that further says your issues aren't ALS, correct? All of the above should quell your fears.

Again, good luck to you and take good care

 

[lgelb]

The EMG was not done too early. If dysphagia/leg/arm problems were due to ALS, that would reflect nerve damage that would show up in multiple areas on the EMG.

I would look into dry mouth, allergies, GERD and/or anxiety as a cause of the tightness. You can feel better with help.