"Could I have bulbar ALS?"

[Aytac12334]

Since the onset of my symptoms, I have been tracking them with the help of ChatGPT. I have consulted with one neurologist, who performed a needle EMG only on my right arm and leg. He said my physical examination was normal and ruled out ALS. However, he did not examine the tremors in my tongue. Following this, I visited an ENT specialist, who said everything looked normal from their perspective and advised me to consult my neurologist again.


Below, I am providing a simplified list of my symptoms created with the assistance of ChatGPT.


Could I be in the early stages of bulbar-onset ALS?
Should I seek a second opinion from another neurologist?
Could these symptoms be anxiety-related?

​

Reason for Referral:
Widespread and sometimes variable muscle twitching, numbness, mild issues with swallowing and speech, jaw muscle pain and fatigue. Symptoms have persisted for several months.


Neurological Symptoms:


Muscle Twitching (Fasciculations):

• Occur throughout the body, in varying areas (especially right leg, left arm, face, torso).
• Recurrent but not constant; shifts location throughout the day.
• No observed muscle wasting (atrophy).
• Persistent trembling of the tongue is present.

Numbness & Tingling:

• Persistent numbness in the right big toe, recently decreased.
• Occasional numbness in the left side of the face, arm, and leg.
• Tingling in the ankle and lower leg while sitting on the toilet.
• This morning, woke up due to intense twitching or tremor in the right shoulder (uncertain which); afterward, tingling occurred in the arm.

Muscle Strength:

• Generally intact; no issues performing daily activities.
• Intermittent fatigue or weakness in arms and legs.
• Fatigue when standing for prolonged periods; sometimes a sensation of legs “giving out” while climbing stairs.

Speech & Swallowing:

• Occasional pronunciation errors on certain words (not lisping); family says they don't notice it.
• Happens a few times a day at most and improves upon repetition.
• Persistent tickling or pressure sensation at the upper esophagus/throat area.
• Feeling of heaviness or sticking during swallowing, but no choking or coughing.

Tongue Movements:

• Tongue does not stay still when extended; visible tremor/twitching.
• ENT observed tremor in the tongue and tongue base but reported vocal cords as normal.

Jaw & Muscle Pain:

• Fatigue and pain in the jaw during chewing (especially with firm foods like sandwiches).
• More noticeable on the left side of the jaw joint.
• Pain present at shoulder junctions and between the neck and left shoulder.

Vitamin & Lab Information:

• B12: Above 1600 (elevated due to supplementation).
• Vitamin D: Previously low (9 ng/mL); currently taking supplements.
• B1 (Thiamine): 30 (reference lower limit: 20).
• Blood sugar & liver: Mild hepatic steatosis; started a diet and lost 20 kg in 3 months.

Previous Tests:

• MRI: Non-contrast brain and cervical spine MRIs were previously done and were clear.
• Neurologist found muscle strength intact and stated “among the strongest upper extremity patients” they've seen.

ENT Opinion:

• “Nothing ENT-related; vocal cords normal, mild tremor in tongue and base observed. Consult neurology.”

Key Points for Evaluation:

• Do these symptoms suggest a motor neuron disease (e.g., ALS)?
• Is contrast-enhanced MRI and a comprehensive EMG necessary to investigate conditions like MS or peripheral neuropathy?
• Could these be functional symptoms or related to anxiety?
• Do the tongue tremor and swallowing issues require more advanced investigation?

 

[lgelb]

No/no/yes.

No.
No.
Yes.
No, not given the normal EMG, vitamin D deficiency, recent significant weight loss/dietary changes that often lead to nutritional imbalances. After a month or so, I would return to your GP and discuss repeat metabolic lab tests.

 

[Aytac12334]

First of all, thank you for your response. I am in an incredibly intense state of fear. Yesterday, I went to see my friend who is a neurologist. He performed a physical examination and said that my muscle strength is intact, that my reflexes were not increased but actually decreased, and that the trembling in my tongue is something normal that can happen in anyone. He said that ENT specialists often refer patients like me to them in such cases, but told me not to be afraid. However, the brief relief I felt after leaving his office only lasted until the evening. The pain in my right leg and the twitching I had noticed over the previous two days drew my attention back there. Right now, I feel like my right arm and leg are weaker, and they seem softer compared to the left side. As I write these lines, I’m on my way to see a physical therapy specialist at a private hospital—I think I’m losing my mind.

 

[lgelb]

Feelings and what "seems softer" are far from the clear clinical weakness that occurs in ALS. Do you really think that your friend is not a competent neurologist or that ALS has suddenly appeared the very day you saw him?

Your mind is playing tricks and you are advised to seek counseling for your anxiety; your PCP can refer you and you should be in touch with them anyway as per above.

 

[Aytac12334]

Thank you for putting up with me. The physical therapist also said that my muscles are fine and that I don’t need to be afraid of ALS. He gave me exercises to do twice a day. When I came home and did them, I felt tired at first, but then I experienced an incredible sense of relief, and the fasciculations significantly decreased that evening (at most, there were just 4–5 isolated twitches throughout the night). This convinced me that it might be psychological.


However, this morning I started feeling pain under my arms, especially beneath my right shoulder—I think it’s due to the exercises. Fasciculations have increased again in certain areas of my body, particularly in my right arm and leg (which are the areas where EMG was performed), and I’m also experiencing unexplained vibrations in my abdomen. They feel like fasciculations, but at the same time, kind of like gas-related tremors—I can’t quite figure it out.


The tongue tremor has noticeably decreased compared to two days ago, both according to my wife and my own observation. However, the problem in my throat, specifically in the pharyngeal area, is still ongoing. I have a globus sensation, and I struggle when swallowing. The ENT specialist had said there was nothing neurologically wrong or related to their field. I’m wondering if I should consult a different ENT.


On Tuesday, I’ll be admitted to the hospital for further tests. A neurologist who is a professor and a friend of my friend recommended hospital admission for a more in-depth evaluation. Should I also request additional evaluations from ENT or gastroenterology while I’m there?

 

[KAD]

I would suggest a modified barium swallow study if not already planned. This is a life xray study where you eat/drink different textures with a bit of barium on them. It’s usually performed by a speech pathologist and radiologist together (at least in the US) and allows visualization of swallow function and potential risk to the airway. As noted by others, current signs do not point to ALS but as a speech pathologist myself, I would recommend your swallow issues be comprehensively evaluated regardless.

 

[Aytac12334]

I will be staying at a state hospital in Turkey, so it might not be possible to do it, but I will ask about it. My wife and I noticed atrophy on my right wrist and the back of my right hand. I sent the photos to my doctor friend, and he said it looks like there might be atrophy but to stay calm since it could be due to many reasons. However, I haven't been able to stay calm since seeing it. My right arm is weaker than my left, and the atrophy has appeared in that hand. The absurd part is that a needle EMG was done for this arm and came back clean on May 23rd. Right now, I’m convinced I have ALS and unfortunately can’t consider the possibility of anything else.
Considering everything I’ve written, doesn’t it seem to you that it’s almost certain I have ALS?

 

[lgelb]

Not at all. There are many reasons for atrophy of the hand/wrist and all of us are asymmetrical -- both sides are never exactly like the other. The fact that the EMG was clean may be "absurd" to you since you think it has changed, but a clean EMG suggests that in fact it has not changed in a way that would indicate the motor neuron damage that is characteristic of ALS and other MNDs.

 

[Aytac12334]

Thank you for your response. I have been in the hospital for the past two days, undergoing blood tests, a lumbar puncture, and a new needle EMG. I am sharing the EMG report as an attachment, but I’ll also write it here in case the attachment doesn't work:

1. Motor and sensory conduction of the right median nerve is normal.
2. Motor and sensory conduction of the right ulnar nerve is normal.
3. Motor conduction of the right peroneal and tibial nerves is normal.
4. Sensory conduction of the right sural nerve is normal.

In the needle EMG examination, no spontaneous activity was detected at rest in the examined muscles. Voluntary muscle examination revealed decreased recruitment and the presence of high-amplitude and long-duration neurogenic motor units in all muscles.


Although the patient has had symptoms for two months, the EMG findings show signs of neurogenic involvement in all examined muscles. However, the findings should be evaluated together with the clinical picture, and clinical and electrophysiological follow-up is recommended.

---

This report really stressed me out, and my doctor is nowhere to be found and isn’t saying anything.

---

 

[Nikki J]

I can’t read the interpretation but there is no spontaneous activity - acute denervation which is an essential part of an als emg.

 

[Aytac12334]

The report part is written in Turkish, I am sending the English version of the report for you. I am very nervous

**June 11, 2025**

**RESULT:**
In this examination, peripheral nerves were stimulated and a needle EMG study was performed.

1. Motor and sensory conduction of the right median nerve is normal.
2. Motor and sensory conduction of the right ulnar nerve is normal.
3. Motor conduction of the right peroneal and tibial nerves is normal.
4. Sensory conduction of the right sural nerve is normal.

No spontaneous activity was detected in the muscles examined with needle EMG at rest. During voluntary contraction, neurogenic motor unit potentials of high amplitude and long duration with reduced recruitment were observed in all examined muscles.

**In the EMG performed on a patient who has been experiencing gait disturbance and weakness for 2 months, findings suggesting neurogenic involvement were observed in all examined muscles. It is recommended that these findings be evaluated together with the clinical picture, and that the patient be followed up both clinically and electrophysiologically.**

**Assoc. Prof. Dr. Tamer YAZAR**

 

[Nikki J]

As I said no acute denervation so this is not an ALS EMG.

 

[Aytac12334]

First of all, hello and thank you for your response.
I understand and accept that the absence of acute denervation in the EMG rules out ALS. I was discharged from the hospital on Thursday. The doctor, like you, excluded ALS and suggested it might be a herniated disc, but the fact that my MRIs from February did not show any herniation seems to have confused him, and he requested new MRIs which will be taken on July 20th.
Due to the lumbar puncture (spinal fluid sampling), I have been unable to get out of bed for two days. Along with this, I feel an incredible decrease in my strength and I seem to get tired faster every day. There is also a change in my voice with some hoarseness. From Monday until now, my weight has dropped from 105.8 kg to 103.95 kg.
When I shared the EMG results with ChatGPT and other platforms, they said that this neurogenic involvement in all muscles could be a sign of ALS, and the absence of denervation and fibrillation might be due to the early stage.
My doctor says he cannot explain the neurological involvement other than by herniated disc, but the possibility of ALS is mentally exhausting me more and more each day.
What should I do? Is there any test you recommend we should get done?

 

[Nikki J]

For a start do not believe chat gpt over your doctor Chat gpt is absolutely not reliable for diagnosis and is easily led by your inputs to say what it thinks you want

Hospitals are not great places to hang out especially if you spent a good portion of your time lying down. There is a very old study where they put healthy young medical students on bedrest for a short time ( think 24 hours) and they measurably lost muscle

You need to let this focus on ALS go You say it is mentally exhausting. The DOCTOR said you don’t have it. Yet you pursued it on unreliable chat GPT and are here now

 

[drewidia]

Aytac, I would echo the statements folks are telling you above. Nothing rings ALS and you are going to drive yourself sick - listen to your doctors. Never use GPT to diagnose it hallucinates (which is the points made above), but it can help you look-up and recenter the chat around Vitamin D deficiency and neurologic issues.

Most importantly Relax and work the problem not create secondary issues (mental anxiety) for yourself. Listen to your doctors.

I'm a big believer in Start with the obvious - Your vitamin D stuff is an issue as 9 is quite low. I would suggest posting on a forum more related to that kind of stuff as the Vit D kind of calls out. Always start with the so called "Mimics" and in your case that sticks out like a sore thumb.

Get out in the sun more ... bare skin exposure (avoid sun block)...and go out during the time of day sun is strongest... do it daily as your body will create more Vitamin D from cholesterol .. you didn't get to 9 overnight and you won't get back over 20 in a day, so there is a journey ahead.