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Problem with Tongue

Posted by elmay @elmay, May 1, 2019

I haven’t seen any discussion of this problem. Perhaps I have missed it.

In mid-November I started losing my sense of taste. Suddenly I could no longer taste things very much on the top surface of my tongue. The rheumatologist I had been to for my recent bloodwork sent me to an ENT. He brushed it off as part of Sjogren’s and told me to rinse my mouth with salt water, not brush my tongue, and never use mouthwash. Following his instructions has not made a difference. In fact, changes have been for the worse.The edges and underside of my tongue now sting with most foods, and the top of the tongue mostly senses pressure and texture. It is getting hard to look forward to meals because they are always disappointing.

Has anyone else had this problem? Has anyone had advice about it? I also have Raynaud’s, a high CK level, and fibromyalgia. The tongue problem is nothing I can’t deal with, but it does worry me that it may be a symptom of something. Any input will be appreciated.

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oldkarl | @oldkarl | Jun 1, 2020

I lost both my senses of smell and taste a few years ago. Since then I have learned that this is, among other things, sign and symptom of several forms of Amyloidosis, including Gelsolin (Finnish). I was told it was Sjogren's, and it is that syndrome. However, the root is most likely one of the many forms of amyloidosis. It probably won't shorten your life any, but don't take a job as a chef.

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oldkarl | @oldkarl | Jul 8, 2020

One more thing you need to note. Sjogren's, or other disorders with the same symptoms, does not arise just from one genetic piece. There are many that are often mistaken for Sjogren's. I suggest you might study several pieces, such as OMIM and Mayo and Cleveland Clinic, Wikipedia, etc. Keep a list of the symptoms for a variety of disorders, and their potential causes. That way, you may be able to sort out what you have, whether Sjogrens or something else. Wikipedia is a great place to start.

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marye2 | @marye2 | Jul 9, 2020
In reply to @astaingegerdm "@elmay - I have been through similar misery. I had been suffering with a then undiagnosed..." + (show)
@astaingegerdm

@elmay - I have been through similar misery. I had been suffering with a then undiagnosed gastrointestinal autoimmune illness. Part of this was Sjögren like symptoms- mouth and eyes- but tested negative a couple of times. I had painful blisters inside the lips and cheeks and red, sore tongue with Superficial ulceration. Flared up when my GI tract did. My doctors at Mayo assumes it was an autoimmune expression of the GI disease. I used all possible products to keep the mouth moist. My teeth deteriorated because of lack of saliva.
I was eventually treated with immunosuppressive medication for my GI illness. A while after finishing the treatment I noticed the dryness gone. Actually drooling.
I think you could get a second opinion about treatment of your mouth. I’m sure there is a way to be more comfortable. If you live near a major university hospital, check to see if any of their departments mention treatment of Sjögren’s.

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For sore mouth/geographic tongue, get RX for Miracle Mouthwash (nystatin), which you swish periodically. I have not had a recurrence after finishing the bottle. For dry mouth, I brush 2X daily, once without toothpaste. Also waterpik. This keeps my gums in good condition as well as teeth. I also wear a mouthguard to protect teeth from clenching while I sleep and helps with TMJ. biotene, xylimelts are useful, but I chew a bit of gum and/or use hard candy to keep up saliva when I have a dry day.

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