it’s B(M)S!

It’s been no secret that my tongue has caused a lot of pain over the past decade. I was so excited when I got an actual diagnosis back in 2021, burning mouth syndrome (BMS). While the diagnosis did not take away the pain, the swelling, the burning, or the frustration, it did give a name to all I had been going through. I have also shared that I had unknowingly been doing things meant to help with BMS like avoiding wines and spicy foods and using only certain toothpastes. But the best thing that came with the diagnosis was that I was prescribed orally disintegrating (ODT) clonazepam to take as needed for when the pain, burning or swelling got too intense. The pill was magical until March 2023.

For almost two years I’d enjoyed the relief the ODT clonazepam provided my tongue. While I still was not back to enjoying wine, I was willing to eat outside the lines more often and bear the consequences because I knew I had some relief. But that came crashing down in March 2023. My neurologist, rheumatologist, and primary care physician (PCP) all tried to help in the ensuing months. To name a few, I tried low dose prednisone (which actually did help but was not a long term solution), magic mouthwash (in various forms, did not help and also led to near anaphylaxis like reactions), Tabasco and water swish and spit (made not only my tongue burn worse, but set my entire mouth ablaze), and taking ODT clonazepam daily instead of as needed.

Meanwhile I was searching for an oral doctor with expertise in BMS, Sjogren’s, and other oral conditions. Amazingly, even though I live by the largest medical center in the world, the closest oral doctor I could find was one with just a specialty in BMS. I’d have to travel out of state to cover the combo I was looking for and I am in no state to do that. This oral pathologist in Houston with just a BMS specialty was the best option, but I was very hesitant to go to him. Overall his rating by patients was high (4.8/5 stars) but one comment caught my eye: “he told me to go see a psychiatrist”.  Yet I decided to keep an open mind and scheduled an appointment.     

I went to him with two questions I was hoping he could answer: was something else more than BMS causing the extreme discomfort since March 2023 and could my tongue no longer be responding to ODT clonazepam. I gave him a brief history of my decade of health challenges, but focused on my tongue. My first visit he was very thorough. He examined my tongue and mouth. He did a brush biopsy. But I admit, I was surprised that he didn’t think I had BMS. He (not a nurse or assistant, which impressed me) called me two days later to inform me that the brush biopsy revealed inflammation and thrush. I’d had thrush before and I didn’t think I currently had thrush so I was surprised. I definitely was not surprised by the finding of inflammation. So he put me on a two week course of fluconazole (and asked that I stop taking hydroxychloroquine during this time, which my rheumatologist consented to) and a dexamethasone mouth rinse. In addition to these two medicines, the oral pathologist told me to use a kid’s toothpaste. It took a while to find a dye free one. I was surprised by this. He also told me to rinse my mouth with a natural solution of baking soda, salt, and water, four times a day. After two weeks, my tongue wasn’t better. After a month, my tongue pain, swelling, and burning was less intense. I am not sure why it was a delayed two weeks after the two medicines had been stopped.

At my return visit, six weeks later, I left disappointed. I told him my tongue was not that much better. He took a quick look. He didn’t examine me thoroughly like the first visit; he literally just looked at my tongue for a second. He concluded that I do indeed have geographic tongue and BMS, a rare combination. He said that I can return to my usual toothpaste. He said that it is not likely that my tongue stopped reacting to the ODT clonazepam because it is such a low dose of .25mg, so I can try taking it as much as three times per day to see if it helps. He saw no reason to see me again unless anything new came up. But of course I had more questions. I only had a chance to ask one more before I was left speechless. I asked how dry mouth played a role in all of this, because I have Sjogren’s and I had previously read about an overlap with Sjogren’s and BMS. He proceeds to tell me that I don’t have Sjogren’s. I briefly thought about walking out with my sister who was with me; we had jokingly prepared ourselves to use a “safe word” on the first visit, but I didn’t think I’d need to use it on the second. Instead I calmly explained that I had been diagnosed a decade ago and have plenty of other diagnoses. The irony is we had actually discussed my complex health history including Sjogren’s, postural orthostatic tachycardia syndrome (POTS), and more during my first visit. I really wanted to tell him he had no bloody business telling me that I didn’t have Sjogren’s because it’s not his specialty and even worse we had discussed it at my first appointment. I was relieved there would be no need for a third visit. But I was bummed I really had not solved my tongue troubles, even by seeing a BMS specialist, since I was already doing the right things.  

A few days after I cooled off, I finally plucked up the courage to go look at his consult notes (because I now rarely look at doctor consult notes as they just stress me out). In the first consult notes, he has my history which notes Sjogren’s – and he even noted diminished salivary flow in his first examination. In his second consult notes, where he did NOT examine me, he noted normal salivary flow, which was so very disappointing to see. He noted that patient stated Sjogren’s was diagnosed in 2014. It is also ironic that I walked in with BMS, only to leave with BMS, despite his initial reaction of that I likely did not have it. Perhaps I should be relieved he did not dismiss me or my symptoms, or tell me I needed psychiatric help. Needless to say, I wanted to yell at him I told you so, it’s B(M)S! So for all future new doctor visits, whoever is with me, I will have a safe word, just in case the appointment is so bad that we have to politely bail. I don’t know why I didn’t think of the idea sooner, but for all you medical journey newbies, it is a humorous way of reacting to when a doctor just doesn’t get it and you have to escape the exam room. All this oral pathologist did was confirm that I have a kick ass core team of doctors who don’t have a specialty in BMS but who still got it right. #sickbutstillsassy #BMS #Sjogrens