Seeking Guidance – Burning Mouth, Throat Issues, and Dysphagia – Could This Be ALS?

[Cadabra]

Seeking Guidance – Burning Mouth, Throat Issues, and Dysphagia – Could This Be ALS?

Previous thread: Need Help


Hi everyone,

I’m reaching out here as I’ve been experiencing a very distressing set of symptoms over the past two weeks, and I’m hoping to get your perspective—especially from those familiar with bulbar onset ALS or who have had similar experiences.

I’m a male 36 years old. Starting on 15 March 2025, after taking a mix of supplements (multivitamin, vitamin E, zinc, B complex, and Caruso’s Erectomax) before fasting for Ramadan, I began to experience:


• Burning sensations in the mouth, lips, and tongue


• Metallic taste and hypersalivation


• Dry mouth and throat pain and spasm


• Subjective slurred speech (noticed only by me)


• Jaw clenching and jaw/tongue pain/burning sensation in tongue


• Scalloped tongue appearance


• Postnasal drip and a globus sensation (feeling of something stuck in the throat)


• Progressive burning and pain in the throat


• And more recently: difficulty initiating swallowing (oropharyngeal dysphagia)—it feels like I can’t coordinate food movement at the start of swallowing. Muscle pain here and there.

On 29 March, I woke up with clear difficulty initiating swallowing, tightness in the retrosternal area, and a sense of weakness in my throat. These symptoms now include a burning sensation in my throat and upper chest, and mucus that seems to pool around my oropharynx.

This experience is terrifying for me because in 2021, after the death of my uncle from bulbar ALS, I went through a very similar scare. Back then I had muscle twitching, perceived slurred speech, swallowing issues, and severe anxiety. I saw two neurologists, one in Brisbane and one in Goldcost, had EMG, NCS, and MRI, and was reassured that I did not have ALS. Eventually, the symptoms subsided on their own and I returned to normal.

In 2022, had same swallowing problems and muscle twitching symptoms and what I thought of to be muscle atrophy but had a barium scan that came back normal. It was found out that I have severe vitamin D deficiency and I took a vitamin D shot and all went to normal.

Now in 2025, similar symptoms are back but with more pronounced throat and tongue involvement. My blood work is normal aside from a pre-diabetes diagnosis. I’ve also had vitamin D deficiency in the past and suffer from GERD, gastritis, and IBS. I’ve been using baclofen, Panadol , and magnesium which have helped a bit with jaw and tongue pain. I must also state that I’m always vitamin D deficient and require an injection almost every 6-7 months as my stomach/intestine has difficulty absorbing it.

The thing is am not currently in Australia where I could have had a run of test again and see a neurologist. I’m currently in Gambia, west Africa and they don’t have a neurologist or even do a serum vitamin D test or a vitamin D injection. So I don’t know if it’s the vitamin D causing my symptoms.

But this feeling of throat tightness, burning, and inability to initiate swallowing is worsening, and I can’t help but fear this might actually be ALS this time, specifically bulbar onset. I’m aware that anxiety can mimic a lot of symptoms, but the physical discomfort and coordination issues are real.

Has anyone here experienced similar early symptoms of bulbar ALS—especially burning sensations, dry mouth, hypersalivation, or difficulty initiating swallowing without food getting stuck?

I would deeply appreciate any insight or guidance. Thank you in advance for taking the time to read this.

Kind regards.

 

[ShiftKicker]

Hi there-

Make sure to re-read the Read Before Posting link. It explains why sensory issues (metallic taste, burning, etc) are something other than ALS. Swallowing difficulties can be caused by a whole variety of things, not just ALS. So the combination of all your entirely non-ALS symptoms and your sense of difficulty in swallowing means you are looking at something other than ALS/MND.

Take care

 

[Cadabra]

Hi dear
Thanks for your response.
Why I posted iis because I feel like my symptoms are progressing. The metallic taste in my mouth has subsided. The burning sensations too. After these subsided, then the swallowing issue started. I feel pain in neck, especially under my jaw and where my neck connects to my head. I have to try numerous times to initiate swallowing.

 

[ShiftKicker]

This is not something we can do for you here- only a doctor can assess what the trouble is. You list a whole variety of symptoms that are not associated with ALS, so this forum is not going to be as helpful as proper medical care.

All the best

 

[lgelb]

Your pre-existing conditions can all contribute to difficulties with swallowing and pain in your neck. If someone in Gambia can suggest medication tweaks, dietary changes, etc., all to the good. Or you can increase your vitamin D intake via diet (especially fish) or just supplement empirically something reasonable like 1000 IU D3 twice daily. You can also try tucking your chin when eating, taking sips of liquid other than plain water before and after eating, things like that.

I see no reason to worry about ALS.

 

[Virgo777]

Hello cadabra I am so sorry but wanted to share with you my experience with burning tung . After I had burning sensation , slowly tung started going numb. I don’t know wether you have same issue as me. When I used to brush and I will pull out tung to clean the tung had movement in the tung as if the sone thing was vibrating under the tung .after one month sensation went away and tung can’t move. When I try eat the very soft egg , it slips in throat and I have to be totally concentrated on the bite of food so t don’t choke .
I was diagnosed Nov 2024 but Riluzole wasn’t available and my fingers started turning in. Af
Started Riluzol in mid December and that’s the only prescription I take. I was loosing appetite and everything tasted sweet. I was on high proptien diet but started throwing up and lost 10 lbs in 2 weeks. Enddd up in ER for dehydration . Got the peg tuned on March 26,2035 slowly gained upto 94 yesterday. I have always been 100 lbs and no reserve . GI Doc said will. be ok in 5 days but I am still in pain. My husband is helping me with high calorie formula plain no flavour .
It is taking long time to heal. I purchased a Feeding tube binder that sits 2/3 inches under the tube opening and I secure every tine so that hanging tube doesn’t get pulled out accidently. Hang in there. Sorry for a long post it might help others in same situation .

 

[Cadabra]

Hi Virgo,
sorry for responding late. I’m back in Australia.
My tongue issues since my last post fluctuates. Sometimes there are burning sensation, tingling, and soreness These symptoms comes and goes.

In Gambia, sometimes I buy vitamin Bcomplex injection and inject myself, as I have a registered nurse background, and the symptoms will alleviate for a few days and the come back again. However my blood work for B12 and folate are normal, so I’m not deficient.

My symptoms just disappeared for themselves and never showed up until recently after arriving in Sydney Australia, and I got a viral infection, not sure whether it’s the flu or Covid, as my flu vac was due and I only have 3 Covid vac shots. The viral infection really hit me and all of the sudden my tongue symptoms appeared again but this time with appetite loss and weight loss, Burning mouth, burning sore tongue, and mucus that I can’t clear in my throat. It also looks like my tongue is getting smaller in size. Nail color changed to reddish brown also.

My current Blood work shows elevated ESR 16 and CRP 20 and low iron 8.9 and saturation 14%, ferritin 113 normal. According to numerous studies, this is clinical functional iron deficiency without anemia and can cause my tongue and oral symptoms and nail color change. However my GP is dismissive as I requested Intravenous iron therapy because I can’t tolerate oral. Iron whether liquid or tablet.

So that’s my story so far. Currently don’t know what to do with my tongue symptoms.

 

[lgelb]

If you can't tolerate oral iron, even every other day, adding iron-rich foods to your diet is the next best thing. As you say, "anemia tongue" is a thing and you do not mention your TIBC, for example, nor your CBC. There are various types of anemia. Without knowing all your results, I can only suggest that if your GP is not certain of the hematology, you consider consulting a hematologist now that you are back in Australia.

Your pre-existing conditions are likely all contributing to your vitamin D/B/iron deficiencies and so the treatment for each of these should be examined closely, perhaps by a gastro, to minimize the effects on your overall health.

I still don't see ALS in this at all.

 

[Cadabra]

I have uploaded my past and recent iron studies for you to take a look at. I have Alpha thalassemia trait so thats why my MCV and MCH are low.

My tongue still burns and I also have burning mouth and lips, especially lower lip. My GP says my tongue size is not shrinking and I have mild glossitis. My CRP is back to normal but my ESR has increased from 16 to 19. I take 400mg L-theanine, high dose omega 3 fatty acid and 670mg vitamin E, they seem to help with the burning for a while and reduce the Globus sensation. Currently to the burning is on and off. My tongue has some mild tiny red spots on the sides and at the base. Even my gums, frontal lower and upper burns sometimes. The burning is not constant, it comes and goes it on, and sometimes when I take the above mentioned pills, it’s reduces drastically or disappear. I most note that there’s no burning when I sleep or wake in between sleep, but as soon as I wake up completely, especially in the morning, the burning starts. The burning sometimes skiers my speech but my speech will be fine when the burning subsides. My throat also burns too.

 

[ShiftKicker]

Hi there. Burning tongue, etc, has absolutely nothing to do with ALS. You might be better served in a discussion group that focuses on blood/hemoglobin disorders.

 

[lgelb]

..and to see an ENT to rule out a localized issue with your tongue/throat.