Sore throat right side and enlarged right lingual tonsil for a year

Hello Nicole

Actually I have, my neuro told me my symptoms do not match. There's actual inflammation of tissue only on my right side, from my mouth and tongue all the way down my throat. The problem is I'm negative for bacteria, no inflammation markers in my blood work. I also get white patches in my throat and mouth. It's a basic infection profile without any tests or biopsy showing any traces of bacteria or infection.

Jeremy have you had a scan and biopsy then?

Yes, they are both fine. MRI and CT are clear, endoscopy biopsy is negative

I wonder if I have this, I have had a stiff neck on the right side for awhile. But the lump on the back of my neck was not always there. I've had the lump for about 2 months. Everything showed up around the same time ..which concerned me lol. Trouble swallowing/shortness of breath/swollen lingual tonsils-mostly right side. Same side as lump in back of neck. Same as weird numbness feeling.

I get the weirdest headaches. I have gotten weird sensations in my head. Super localized like if I were able to-i could reach in and chase It. It felt like it surged through part of my head and i could feel exactly where it was moving. But it was real quick. I also get these headaches that last only a few minutes but it feels like a tiny tiny spot that feels deep and freezing. Like a quick brain freeze. I also have ear pain on right side. (and hearing loss-both sides-and I'm only 23).

Katherine

There seems to be an underlying cause for all of us, one in which the doctors can't identify. Some on here have been living with this for years. I have had every test imaginable, every antibiotic. Mine reoccurs. However, the good news is that if yours responds to antibiotics then there's nothing sinister going on . It's annoying I know, but I would take comfort in it responding to some form of medication. I feel mine in my throat as well but again....testing is negative. I'm afraid the cause has alluded us to this point.

what scares me about the antibiotics is that i get spurtsof wherenit comes and is REALLY painful..its not everyday so when i go and get prescribed a antibiotic I cant tell if its actually working to fix it or its going away on its own like it usually does in 3-4 days.. I guess I'll call a ent and start there.. any insight pleas let me know. Ty so much..

I think mine is autoimmune related. I have tested positive for celiac or gluten antibodies. There's a condition known as sjorgrens syndrome that often comes with celiac. It causes dry mouths, eyes and esophagitis and throat swelling. I'm going to get a salivary gland biopsy to verify this as blood tests can be negative but you can have it with negative blood tests.

Jeremy, what I have sounds very similar to you. I wonder if I should ask if it could be celiac related.  I have been to a neurologist as my ENT thinks I have glossopharyngeal neuralgia since all of this started after my second tonsillectomy, but I have actual inflammation in my throat. My lingual tonsils are swollen, and the right side of my throat. I have had cat scan and ultra sound but they have never mentioned doing a biopsy. It’s been 2 1/2 years and I don’t know what to do anymore! 

I’ve eleminated dairy and gluten from my diet. I do it on my own without doctors supervision because I’m desparate what to else to do. My lingual tonsils are still swollen but not as before. 

I will have to try that and see if it helps! I’m willing to try anything. They even told me it’s from my allergies so I take allergy drops and acid reflux medicine but nothing helps. 

But i also took 10 days of antibiotics and simultanously decided to cut down on dairy and gluten. though I eat butter from time to time. At least the tonsil stones are far less than before. Still my ENT scheduled me for MRI. I don’t want to do that as it is going to be with contrast and my body cannot handle chemical stuff like the dye for MRI. Let me know if that helps you. Allow at least 3 weeks to see the results.

Thank you I will! Update us on your MRI results as well. Hope it all goes well. 

I forgot to mention that my ENT told me to gargle warm salt and baking soda water when my lingual tonsils feel swollen. I mix 1/2 tsp salt and 1/2 tsp baking soda in 8oz of warm water and gargle it in little amounts. Do this several times a day for a few days until it feels better. It’s a short term solution but it does help me. 

Thank you! for me the soda irritates my throat, I don't know why. I use sage leaves, make them as a tea and then gargle with it. It is very good for throat, I used it whenever I had tonsillitis, years ago when my palatine tonsils weren't removed. Most of the people who have problems with their lingual tonsils had tonsillectomy in the past.

I also forgot to ask you if you have post nasal drip? if so try to get rid of that too. I use seawater for cleaning the nose.

 

I have inflammation in mine too. It's bad this very moment, there's a condition that goes along with some Celiac's called eosinphil esophagitis. It's autoimmune and must be treated with an inhaler steroid. I'm awaiting my third endoscopy to test for this. It causes throat swelling, tonsil pain and trouble swallowing, it can also trigger gerd. I'm sorry you are dealing with this and I will help or aid in any info I can

I was reading that the lingual tonsils can swell to compensate once the palatine tonsils are removed. Have your doctors talked about removing the lingual tonsils? I’m really scared I will eventually need my lingual tonsils removed. Yes I have a post nasal drip as well. My ENT did a scope and said I have cobblestone throat from chronic post nasal drip. So I need to get that under control too. I will try gargling sage tea! 

Thank you! I’m sorry you are dealing with this as well it’s very frustrating and I’m starting to feel depressed about the chronic irritation and pain. Thank you for the info about eosinohil esophagitis. I will ask my doctor about it. Please let me know what your endoscopy shows. 

No, I haven't talked about removing tonsils. She first wants to see the cause of the swelling. She said she was looking for either tumor or inflammation. But before MRI I'd like to have endoscopy too.

Jeremy, do you also have swollen lymph nodes anywhere in the neck, under jaw?

They often feel swollen and sore, but they are never enlarged upon exam. I'm always told they are normal

Do you know the sizes of the lymph nodes. Mine are stated as normal appearing lymph nodes. But then I asked a copy of the report and the measurements are like 1.7*1*0.5cm. anyways they're swollen, and I can feel them when I touch under the jaw.

Im not sure on the size, I know my thyroid to me feels enlarged as well but it scan is normal. My thyroid panels are all normal and negative for hashimotos. I'm getting tested for sjorgrens syndrome next week as well.

Hope you find the answers you need. I have elevated blood markers for Sjogren’s but the rheumatologist said it was not enough for a diagnosis. She suggesteda lip biopsy but also warned me that it would make no difference for me.

All please check for elongated stailoid process or eagle Syndrome, I have exactly similar symptoms, trained all tests/scanning finally found that it is due to eagle syndrome. Do check for it and let me know

I had a cat scan that shows a gap in my right styloid and that’s the side I get all of my pain and symptoms. It looks like it’s broken in half. I asked if I had eagles syndrome and they said they didn’t think so. The doctors weren’t concerned about it and said there is “probably cartilige” there and that there is probably not actually a gap so they won’t investigate further. But I find it weird that I have that on the same side I have all my symptoms. 

how do you check it? All I can see enlarged lingual tonsils. lots of lymphoid tissues are swollen at the back of my throat, the doctor confirmed it by putting a scope through my nose.

That's frustrating, I know the only treatment is steroid use or ivig which is expensive