I have suddenly (literally overnight) had the tip of my tongue turn dark red and feels like I drank something extremely hot and burned the tip…and…at the same time I have lost my sense of taste! I can see some posts about EM does in fact appear in the mouth but does anyone know if the loss of taste is also the result of the EM? If it is, do we ever get the ability to taste back? I can smell the food but can’t enjoy it much since I can’t taste it. Is there something I can do to address the mouth EM, assuming that is what it is? I have EM as a result of my rare bone marrow cancer.
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For the past year my taste has been affected as well, my tongue goes numb throughout the day. I feel that I have secondary em. I have been worried about polycythemia Vera, I have a lot of the same symptoms. My red blood cells have been elected for the past year but not alarming. I have em mainly in my hands and arms. I have just started getting it on my ears, face, feet and legs. When I have brought up my numb tongue and lack of taste they have shrugged it off. I have not noticed my tongue burning or redness though. May I ask what type of bone marrow cancer you have?
Sometimes sucking on mints can clear your palette, I drink herbal tea and buttermint is my favorite and seems to rejuvenate my sense of taste but I don’t think you would want any hot beverages
Melinda Thank you so much for your responses! I didn’t know until I got a notice in my inbox that you had but appreciate your doing so. My PCP felt my loss of taste was related to a botched oral surgery and extensive recovery and said it would be ‘self limiting’ but I was in a panic so decided to post my question. It ended up resolving for the most part. Got the taste of sweet back first and now can taste sour again. Interesting you have PV. Are you seeing and MPN Specialists for evaluation and treatment? It is my understanding that if we get our bone marrow cancer better controlled, the EM will not be as bad and that taking ASA helps with what remains. I have ET and am taking an Rx to try to lower my platelets while balancing QoL. I don’t know if you know about the FB site for MPN ppl like us but there is a great deal of good information on the site from around the world and since this site is for EM, I kind of am thinking maybe I shouldn’t go into more detail here about our shared bone marrow cancer. If you want more info and if it is allowed I can send you my name privately but I am brand new to the EM site and it is a bit of a challenge to figure out so far but need to do so. Hope this helps and thanks again for your help:blush