Burning mouth syndrome (BMS): Is this an autoimmune disease?

All of my doctors and dentist thought I was dealing with a nerve issue. Trigenial nerve but did not spell that right. I was given amitripline and gabapentin first then changed to pregabalin and several other medicines my doctors tried for nerve damage.I just shared my experience. None of my doctors thought reflux treatment would work. We just tried and it took about 2 months for me to improve. 4 months out now and I am sharing my experience. I don’t ever notice anything coming up into my mouth from esophagus. To me it seems like my esophagus was so damaged by the reflux that the metal taste, overly sensitive smells, burning mouth, tongue, and tooth sensations start at the damaged esophagus from the reflux and that sends the nerve signals to my mouth. My mouth tissues and tongue would swell and just hurt so bad. I hope you find your answers. I went through so much HELL and searched for answers for so many years…I just wanted to make others aware. Look online for Reflux and metal taste in your mouth. Metal taste in your mouth is a symptom of reflux.print out the article and take it to your doctor. I recommend an esophagus scope because when you have reflux you could have Barrett’s. My doctor did not think an esophagus scope would help me at all. Well it helped get my final diagnosis after almost 4 years of searching. Remember that treatment for reflux results can take from a few weeks to a couple of months. Sucralfate liquid 4 times a day with ppi 40 mg twice daily and baclofen 5mg 4 times daily sure gave me results. Good luck!

I had a long list of what my burning mouth started after. The diagnosis of reflux ( silent) and Barrett’s was so far removed from items on my list. I am wondering if coating your mouth and tongue while taking sucralfate liquid to coat esophagus makes a difference in the metal taste after using it for a couple of months along with a ppi. I certainly found my miracle reflux treatment for my burning mouth and metal taste and overly sensitive nose smells.

I can’t rule anything out, because I don’t know what it is, but to me….the taste doesn’t seem to be from a substance in my mouth. It feels like it is from my tastebuds. My lips taste like the bitter, it seems like it’s in my gums even. Also, when it hit, it was sudden. Bam! Suddenly my mouth was tasting this horrible metallic taste. I was upright, driving my car and no substance was in my mouth. This is why it seems to be nerve fibers affected. The ENT feels covid damaged the nerves.

Read about Reflux and metal taste in mouth on line. Metal taste in mouth is a symptom of reflux.

I will pursue this as a potential culprit. I do have an adjustable bed at my weekend house. May get one for my other place too. I already eat a very anti acid diet, since I want to avoid reflux. My mom has it. Do all the things as if I do have it…no night eating, small meals, no fried, no spice, no chocolate, etc. I have a gastroenterologist for my chronic constipation, which is doing great lately.

I appreciate your sharing. Thank you for your input.

I can’t rule anything out, because I don’t know what it is, but to me….the taste doesn’t seem to be from a substance in my mouth. It feels like it is from my tastebuds. My lips taste like the bitter, it seems like it’s in my gums even. Also, when it hit, it was sudden. Bam! Suddenly my mouth was tasting this horrible metallic taste. I was upright, driving my car and no substance was in my mouth. This is why it seems to be nerve fibers affected. The ENT feels covid damaged the nerves.

All of my doctors and dentist thought I was dealing with a nerve issue. Trigenial nerve but did not spell that right. I was given amitripline and gabapentin first then changed to pregabalin and several other medicines my doctors tried for nerve damage.I just shared my experience. None of my doctors thought reflux treatment would work. We just tried and it took about 2 months for me to improve. 4 months out now and I am sharing my experience. I don’t ever notice anything coming up into my mouth from esophagus. To me it seems like my esophagus was so damaged by the reflux that the metal taste, overly sensitive smells, burning mouth, tongue, and tooth sensations start at the damaged esophagus from the reflux and that sends the nerve signals to my mouth. My mouth tissues and tongue would swell and just hurt so bad. I hope you find your answers. I went through so much HELL and searched for answers for so many years…I just wanted to make others aware. Look online for Reflux and metal taste in your mouth. Metal taste in your mouth is a symptom of reflux.print out the article and take it to your doctor. I recommend an esophagus scope because when you have reflux you could have Barrett’s. My doctor did not think an esophagus scope would help me at all. Well it helped get my final diagnosis after almost 4 years of searching. Remember that treatment for reflux results can take from a few weeks to a couple of months. Sucralfate liquid 4 times a day with ppi 40 mg twice daily and baclofen 5mg 4 times daily sure gave me results. Good luck!

With my reflux nothing was ever in my mouth and I never felt anything backing up into my esophagus. I was absolutely shocked when my esophagus scope showed reflux and Barrett’s. To get Barrett’s I must have had reflux a long time! Now I am definitely on top of things!

I have been reading tonight with lot's of hope. I have had BMS for 5 years, no help anywhere....mine started with a bunion surgery. 2 weeks after. The doctor said they didn't do anything to cause. I even remember asking if the anesthesia was causing this pain.?
It's really awful, no joy in eating.
I am going to talk with my GP soon.
Thank you for sharing your journey. Everyone
Robbie

My nutritionist told me to ONLY drink bottled water because of the fact I’m autoimmune. She said by the time you get any notice from the town that you need to boil your water because something is wrong with it you’ve already drank it for god knows how long the nasty infected water. And of course being autoimmune you could be very sick. Or worse. So I stick to bottled water despite the cost….and it’s definitely an expense I wish i didn’t have because it’s about $250 a year just for water to drink. 🙄