Problem with Tongue

Posted by elmay @elmay, Wed, May 1 9:45am

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.

Hello @elmay, I have no medical training or background but it sounds like you might have a taste disorder of some sort. Here's some information I found on the National Institute of Health site.

Taste Disorders
https://www.nidcd.nih.gov/health/taste-disorders

Have you thought about getting a second opinion? If you would like get a second opinion from Mayo Clinic, you can find the contact information for
the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

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@elmay Welcome to our group we aren't Dr,s but can help with what helps us. I never heard of what you are discribing but have you seen your Dentist? Maybe he can give you some input 😉 Let us know what you find out will you,? Good luck 👍

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Hello @elmay

I can understand how frustrating it is not to be able to taste. I have a rather mild form of Parkinson's (PD) and a diminished sense of taste and smell is typical of PD. How is your sense of smell? Is it also diminished?

Losing your sense of smell certainly does take the "zing" out of the eating experience and food becomes flat and eating is not nearly enjoyable without a strong sense of smell and taste. I have compensated somewhat by using more spicy condiments with my food, For example, I rather than using yellow mustard I will use spicy mustard and rather than ketchup I might use salsa or chili sauce.

I see that @johnbishop and @lioness have already made some good suggestions for your problems with tasting. Addressing this problem with a dentist (as @lioness suggested) might be helpful. Also, a second opinion is always your right as a patient seeking for answers. Since many neurological problems (like PD) do affect nerve endings (such as taste and smell), a consult with a neurologist might also be in order. Please know, however, that a lot of neurological disorders take a long time (as in years) to reach a diagnosis.

You don't mention your age, however, some of these senses do diminish slightly with the aging process. Some medications can also affect the senses. Have you checked out all of your medications and looked for any side effects? A lot of us have had hard to diagnose problems that have not fit into parameters that make it easy to diagnose, so I do suggest that you do some detective work on your own by researching your meds as well as symptoms on reliable websites. Often patients need to become their own Sherlock Holmes as they seek for answers.

Here is a Mayo website that might be helpful, https://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075?utm_source=newsletter&utm_medium=email&utm_campaign=housecall. If you click on the link you will see that it offers you a symptom checker.

Also, if you seek a second opinion or a consult with another specialist, here is a discussion on having an effective appointment with a new doctor, https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

Will you post again and provide an update on how you are doing?

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I have UC and I have had a similar experience with the tongue. It is very distressing. I have been trying to keep my tongue wet now and it's helpful, although not 100%.

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Thanks for your input. Since I wrote about this minor problem, I have heard that loss of taste is relatively common in older people. I am 71, so I guess it is reassuring to know this is probably not a sign of anything too worrisome. Nevertheless, it is a bit disappointing to not enjoy the taste of a good meal. The ENT said to not brush my tongue during teeth brushing and to avoid mouth washes. He said to use saltwater instead. He said it is probably a result of the Sjogren ‘s syndrome. So far, no change. Is this reversible, or do I just need to accept it?

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@elmay As you probably know, Sjogren's syndrome is an auto-immune disorder. I'm not sure if the loss of taste is reversible or not, but your doctor could probably help you with that question. Here is a good video about Sjogren's syndrome that you might find helpful.

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