Aa
Just venting/ new disease
So about a month ago I noticed my mouth was sore. I looked in the mirror and noticed white spots on my tongue. The docs thought it might be thrush so placed me on meds for that. They didn't help, and as it turned out, it wasn't thrush. Then my doc thought it was lichen planus (an autoimmune disease that attacks the tongue). She gave me a topical steroid, which also didn't help. My tongue has been swelling too so I had to go to the ER, who sent me to an ENT today. He said it could be a variety of things, but lichen planus is very very rare (although it could be it). He took a biopsy. My whole mouth is swollen so sore now, but mainly I am freaking out. Lichen planus is terrible, but what if it's cancer or something? I don't even know how to handle this. The stress is making me go hyper again, and I'm starting to have panic attacks. I just don't understand why all this is happening to me right now. The hashi's crisis and thyroid removal next month was enough =(. I just wanted to vent my frustrations!
I think it would be spelled Sjogren's Syndrome. That is what I was diagnosied with recently. Hope all goes well for you Wednesday and can finally get some answers to your long hard journey. You have really been through it! Good Luck! I am still praying for you!
Yeah it could very well be something to look for. I probably need all the extra testing they will give me so they can find out everything that is going on. I'm kind of hoping that once my thyroid comes out, everything else will just magically disappear lol. I know that is wishful thinking, but hey. Nothing is helping my mouth, in fact it's a little worse. It's everywhere on the sides and my tongue and gums. I'm probably going to need steroid treatment, which I REALLY did not want. Stress makes it worse, but when I have a thyroid that is bouncing all around and a mouth that is causing me tons of issues, its kind of.... STRESSFUL. When my old endo was convinced everything was in my head he told me depression is common with this disease. Yes, I'm depressed because of this disease. I'm depressed because I can't get well, and you are only worried about my mental health! Errrr.
When my labs are normal, I feel my worst. I'm not sure what goes on. I must not have a normal state at what most of the others do or I just don't stay in one place long enough (which they suspect). Maybe your normal isn't their normal.
When my labs are normal, I feel my worst. I'm not sure what goes on. I must not have a normal state at what most of the others do or I just don't stay in one place long enough (which they suspect). Maybe your normal isn't their normal.
don't worry, it's a pretty mild/benign condition and often goes in hand with other autoimmune diseases. Main symptoms are dry mouth,(which can contribute to the sores) dry eyes(gritty), joint pain, and fatigue. It's kinda self limiting, and it's not even a issue for many that have it, unless they have a flare.The reason i think I have it is b/c I'm constantly getting cavities(also a sign) and I do get joint pain off and on, something I'VE JUST ATTRIBUTEd to having thyroid antibodies, BUT my labs are normal 99% of the time.
Hmmm I'll have to look into it. The dermatologist wants to do a bunch of blood testing for autoimmune disease and hep C and stuff like that. He doubts it's hep C because I don't use needles obviously and never had a blood transfusion. I'm almost afraid to look up this lol.
Ok, cuz I was reading some symptoms that matched up with yours called sjourners(sp) syndrome. It's another autoimmune disease. I researched it b/c I think I may have a mild case of SS myself.
It's not cancer! The biopsy just showed lots of inflammation, and it could not rule out lichen planus. I see the ENT again on Wed. so I think he is pretty sure it IS lichen planus, but I don't know where we will go from here. I suppose the blood work has to start. Thank you for asking =)!
I guess anything is possible. It really looks like lichen planus though which also has the pain and swelling. It really fits the stereotype of that disease. My fam doc was convinced it was this as well. Hopefully she was right (at this point, I'd rather it be that then something worse!). I guess I'll know soon enough, ahhh.
The only other thing I can think of is some sort of virus -like those caused by herpes strains (shingles, chicken pox, etc.). They can be horribly painful, cause the swelling and sores you describe. but it is unusual for them to show inside the mouth. A shingles attack will follow a nerve path and usually be limited to one side of the body (or in your case one side of your mouth or tongue). ~MM
Thank you. It definitely can't hurt to try! Hopefully I will know what it is for sure very soon.
Well this solution may not work for you since your case seems to be extreme, but in some cases, it really is the little things that work. Try gargling with club soda. It normalizes some type of acis in our mouths. I learned this when I kept getting canker sores. Now anytime I feel a sore coming on, I garlgle with it and it stops it dead in it's track. Ppl who go thru chemo and get ulcers as a result swear by this remedy as well.
Mine has a few individual ulcers on the tongue and stuff on the sides of the mouth and gums. I guess this is why they are suspicious of other things but thrush. It doesn't really look like a white coating, just a big white ulcer and a few small ones.
Totie- that sounds terrible. There are so many things it could be I guess. I just hate waiting for the results. It's so scary.
Medic- I haven't been on antibiotics for years, this just popped up out of nowhere. I have been taking good bacteria though just in case. None of these things seem to make a difference other than the magic mouth wash which takes down some swelling. The ulcers sometimes appear lighter, but they never change shape or start to go away.
Totie- that sounds terrible. There are so many things it could be I guess. I just hate waiting for the results. It's so scary.
Medic- I haven't been on antibiotics for years, this just popped up out of nowhere. I have been taking good bacteria though just in case. None of these things seem to make a difference other than the magic mouth wash which takes down some swelling. The ulcers sometimes appear lighter, but they never change shape or start to go away.
I went through that about 2yrs ago. For 8 months they treated me with all kinds of medication to help with the burning tongue, mouth. My tongue was white as well. I did not get it bad enough to go to the ER, but my mouth and tongue were on fire. I was literally suck in cold air non-stop. I know they kept telling me it was oral thrush. I think I developed it after taking an antibiotic for an infection.
For me it turns out I had chronic sialendititis of the submandibular gland with two enlarged lymph nodes. I had to have a neck dissection to remove the gland & lympy nodes. I have not had any issues until recently when I noticed my tongue starting to burn & having to suck in cold air again. I did have another ct scan with contrast done last week, but won't know the results until I see my surgeon next month.
I could be developing the oral thrush because I am on 3 antibiotics for H. Plyori at the moment.
For me it turns out I had chronic sialendititis of the submandibular gland with two enlarged lymph nodes. I had to have a neck dissection to remove the gland & lympy nodes. I have not had any issues until recently when I noticed my tongue starting to burn & having to suck in cold air again. I did have another ct scan with contrast done last week, but won't know the results until I see my surgeon next month.
I could be developing the oral thrush because I am on 3 antibiotics for H. Plyori at the moment.
It looks like we posted at the same time! Even if it does turn out to be mega-thrush, it may take a while to get rid of it. I do hope you find your answers soon! (((HUGZ)))~MM
Hi again. I just reread my post to you and I realized I forgot to explain something. If you were on an antibiotic recently, the antibiotics kill all bacteria good or bad. We need "good bacteria" in our bodies (especially in our gut) to keep the yeast in our bodies from going nuts. We females have several particularly warm and moist areas yeast LOVE to thrive and if it weren't for a healthy level of good bacteria, we'd have a constant battle on our hands.
The antifungal suppresses the yeast long enough for the "good bacteria" to overwhelm it and kill it. If an antibiotic has killed off all the good bacteria, -you still have "yeast starter" and it will grow again -fast! If a yeast infection (like thrush) gets bad enough, it can cause cellulitis (hard red swelling) in local tissues and can actually get into your blood stream, causing much worse. The solution is simple -replenish the "good bacteria" by taking probiotics and/or eating yogurt with active cultures in it (acidophlus, lactobacillus, etc.). Once their numbers get high enough, they will beat back the yeast. -Also stay away from food that "feeds" yeast -particularly white sugars and white floured foods.
I hope all this is helpful! :) ~MM
The antifungal suppresses the yeast long enough for the "good bacteria" to overwhelm it and kill it. If an antibiotic has killed off all the good bacteria, -you still have "yeast starter" and it will grow again -fast! If a yeast infection (like thrush) gets bad enough, it can cause cellulitis (hard red swelling) in local tissues and can actually get into your blood stream, causing much worse. The solution is simple -replenish the "good bacteria" by taking probiotics and/or eating yogurt with active cultures in it (acidophlus, lactobacillus, etc.). Once their numbers get high enough, they will beat back the yeast. -Also stay away from food that "feeds" yeast -particularly white sugars and white floured foods.
I hope all this is helpful! :) ~MM
They seem convinced it is not thrush. I did not take an antibiotic with the nystatin. It didn't change the shape of the ulcers at all. I tried every remedy known to man. I've been drinking kefir and taking acidophiles , I tried vinegar, coconut oil, grapefruit seed extract etc etc. I was given magic mouthwash at the hospital yesterday. It does help the pain and swelling. At times it kind of makes the ulcers less, but really they never change. The sides of my mouth have it too, which is what they biopsied. I've looked at lichen planus and it really does look like it. It would make sense as to why nothing has worked to help it. My whole tongue is burning and my mouth is inflamed.
I HOPE though by some miracle it just comes back as thrush. I did look at oral cancers and they really didn't look like white stuff all over the mouth. Thank you for telling me that anyway, it does make me feel better lol.
I HOPE though by some miracle it just comes back as thrush. I did look at oral cancers and they really didn't look like white stuff all over the mouth. Thank you for telling me that anyway, it does make me feel better lol.
Just curious, what was the med for the thrush (Nystantin maybe?) and were you on an antibiotic at the same time or afterwards? If so, the antibiotic may have counteracted the med and you still have a yeast infection (thrush).
Two things you can try. There is heaven in a bottle -a prescription called "magic mouthwash." It will give you instant relief -it contains viscous lidocaine, nystantin, and mylanta (I think). I had a badly inflamed mouth and tongue when I was going through chemo for my liver. My body's PH was all messed up and my "good bacterias" were so low that yeast was no longer being held in-check and was thriving happily. This is my suspicion of what is going on with you.
If you can't get this, an old-fashioned remedy of mixing epsom salt (1 tbs in 1/2 cup water) and holding mouthfuls for 15 mins (or however long you can stand it) and then spit it out. -You don't want to swallow, or it will give you the "scoots". Follow that with swishing with someting like Danactive drinkable yogurt (swallow this!) twice a day -and don't drink anything (or brush your teeth) for an hour afterwards. The epsom salts (magnesium citrate) will decrease the inflammation (takes the "heat" out) and the yogurt swish will restore the "good bacteria" -killing the yeasties naturally.
If it makes you worry less, the oral cancers I've seen look like a purple-red bruise and are usually painless until an ulcer opens up. Take care and I hope this helps! (((HUGZ)))~MM
Two things you can try. There is heaven in a bottle -a prescription called "magic mouthwash." It will give you instant relief -it contains viscous lidocaine, nystantin, and mylanta (I think). I had a badly inflamed mouth and tongue when I was going through chemo for my liver. My body's PH was all messed up and my "good bacterias" were so low that yeast was no longer being held in-check and was thriving happily. This is my suspicion of what is going on with you.
If you can't get this, an old-fashioned remedy of mixing epsom salt (1 tbs in 1/2 cup water) and holding mouthfuls for 15 mins (or however long you can stand it) and then spit it out. -You don't want to swallow, or it will give you the "scoots". Follow that with swishing with someting like Danactive drinkable yogurt (swallow this!) twice a day -and don't drink anything (or brush your teeth) for an hour afterwards. The epsom salts (magnesium citrate) will decrease the inflammation (takes the "heat" out) and the yogurt swish will restore the "good bacteria" -killing the yeasties naturally.
If it makes you worry less, the oral cancers I've seen look like a purple-red bruise and are usually painless until an ulcer opens up. Take care and I hope this helps! (((HUGZ)))~MM
I am all eyes and typing!!! Ears if you need them. ;) I am sorry to hear that you are dealing with this.
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