A Loss of Taste

Somewhere along the way, my ability to savor certain foods has waned. Actually, it’s done more than waned. In some cases, it has warped into a bizarro situation where items I’ve long loved now suddenly taste of bitter disappointment.
 
What food now tastes terrible to me? My beloved morning coffee (with the exception of peppermint-flavored java), several red wines I used to adore, some marinara sauces, toasted everything bagels, and even the heartiest of sandwiches, unless they’re slathered with this spicy chipotle mayo I found.
 
Over the past two years, my ability to taste these favorites has gradually diminished. More recently, it significantly ebbed to the point where several food and drink items no longer taste familiar. The caramel-flavored coffee I bought the other week? It was outright disgusting in my mouth.
 
Is MS the culprit? My taste thief?
 
The first time I noticed something awry, I was eating a salty cracker. I expected it to be salty, only it wasn’t. Figuring the lack of salt was just an anomaly for that one cracker, I tried another. Still couldn’t taste the salt.
 
I started keeping track of things that didn’t taste “right.” Alarmingly, the coffee released unfamiliar bitter notes. I didn’t have a stuffy nose or a sinus infection. I could breathe fine. But when I mentioned this to my neurologist, he said he’d never heard of MS-related taste problems and moved on to things he could quantify, like how long it took me to walk the length of a hall and back. I was left with my messed-up mouth and lots of questions.
 
I dove into research, eventually discovering a couple of articles written by folks with MS attesting to the fact that they’d experienced a loss of taste, including one written by a classically trained chef. In 2016, the Journal of Neurology published a study entitled “Taste dysfunction in multiple sclerosis” which concluded “a sizable number of MS patients exhibit taste deficits that are associated with MS-related lesions throughout the brain.” Anywhere from 5 to 20 percent of MS patients have this problem, the study found. 
 
So maybe I’m not imagining this after all.
 
After reading the study, I experienced crushing self-pity. I’ve had a dairy allergy for nearly two decades, one that makes pizza, butter, cheesecake, ice cream and most items on a restaurant menu off-limits because dairy is omnipresent in the American diet. I’ve tried to make do, substituting olive oil spreads for butter, using almond milk instead of cow’s milk. I tell people the food I eat is good, but, if I’m being honest, the substitutes don’t come close to the richness of dairy products, like that crisp sweetness of a grilled cheese sandwich which I crave.
 
Now, even the non-dairy things I can safely consume are tainted. In response, I’ve been seeking out strong flavors. I’ve been quite liberal with spices, sweeteners and/or salt in a vain attempt to discern a pleasing pop of flavor. I’m desperate for it.
 
Which brings me to another problem: I can no longer gauge how the dishes I’m cooking will taste to other people. This means when I’m not following recipe directions or making a dish exactly as I’ve always made it, I’m seasoning in the veritable dark. If I spice a dish to the point where I can detect something, it’ll likely be way too sweet or salty for everybody else.
 
The food that has remained blissfully the same: citrus fruits. I delight in them as they explode with flavor and remind me that not everything has changed. Except my cooking. Consider yourself warned.
Tags Research, Symptoms      5 Appreciate this
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Meredith

Meredith O’Brien

Meredith O’Brien is a Boston area writer and journalism lecturer. She is a die-hard Red Sox fan who lives with her husband, three kids ,and two noisy dogs. Her fourth book, "Uncomfortably Numb: A Memoir," about her MS experience, will be published in March 2020. Follow her on Twitter @MeredithOBrien, or visit her website at mereditheobrien.com.  

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    13 Comments

  • Avatar
    lovereign  Feb 21, 2019 4:09 PM
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  • Amy Krogen   Feb 22, 2019 1:01 AM
    I’m so glad I found your blog post! You just perfectly described what has been going on with my mouth the last 3-4 months. I keep telling my family I can’t taste salt anymore. Everything taste bland. Even my almond milk & coffee tastes different. I’ve warned them that they have to taste test while I cook from now on or they won’t be able to eat the food. I have noticed I’ve been craving hot tamales candies because they are strong cinnamon flavor that I can actually taste. Thank you for proving I’m not losing my mind & this is probably happening because of my MS.
  • masonipatricia2  Feb 25, 2019 12:18 PM
    Once, I lost almost all sense of taste!. EVERYTHING tasted bitter. I just found it hard to believe that ALL my favorite food items were bitter. I am a food junky and really loved my sweets. I'd eat a cheesecake and yuck!

    Luckily with my MS I see everything as a challenge and KNOW things will get better‼️
  • Avatar
    Golgotha  Feb 26, 2019 3:03 AM
    I've also had a loss of taste. And no, I'm not just a male talking about my fashion sense. :)

    I woke up one morning with a nasty metallic taste in my mouth. I was pleased when that disappeared the next day but then noticed that everything I ate tasted bland. My sense of smell worked, but no particular taste at all.

    I tried a variety of foods but it was the same thing, nothing with any real taste. Lots of spices, spicy-hot foods, my favorite foods -- no taste.

    Weeks later I discovered that I could taste "sour" while testing my taste eating a Sour Patch Kids candy (being on an MS-related diet, I'm normally not a candy/sugar eater). I then used that candy and found I could ID some of the flavors of the various colors (trust me, they're not great candies:). Over a period of days my sense of taste came back. Today, like many of my MS symptoms, it varies day-to-day, week-to-week.

    My other "discovery" was that losing your sense of taste is a great way to lose weight. Not being able to taste anything really takes the fun out of eating and makes it a chore. :)
  • Annie Woodall-Parson   Mar 4, 2019 3:51 PM
    Living with MS. It all started when I was 40, I was diagnosed. I had started falling down frequently along with experiencing very bad headaches. Went thru a series of test about a week later was told I have MS but, no medication was prescribed to me at that particular time. I had no symptoms until I turned 45 then I began taking Rebiff(shots) for two years, then Tasabre( an infusion) two maybe three years after that I was given abagio. Now I am currently taking ocrevus ( an infusion) which my symptoms have stayed the same for past few years until march of 2017 I suffered a stroke which slowed my speech process. How are you doing?
  • Melanie Crane   Mar 23, 2019 12:24 PM
    I experienced the same thing and didn't give it much thought until I researched it and yes, it can be another symptom with MS. I told myself I wouldn't let it get the better of me and decided to send time savoring flavors instead of just eating for the sake of eating (which I have done for years). I am sorry foods have lost their flavor for you, and hope you find something that taste reasonable. Keep trying. Thanks for your blog.
  • Leeaura   Mar 23, 2019 12:31 PM
    My diagnosable symptom was a numb tongue that lasted for 6 months. I, too, thought it was just burned at first. Weirdest symptom to me is my messed up sense of smell. Any time that I’m near a very strong scent (perfume counter, cleaning products, etc) I smell what I think a decaying corpse must smell like. Ugh!
  • Mary Michaels   Mar 23, 2019 1:24 PM
    My taste issues started with a horrid metallic taste. I even wondered if my dear sweet husband put "something" in my coffee!! After a week or so, I could taste absolutely nothing! I survived on Capt'n Crunch cereal, with a tiny amount of milk. It was the texture that made it appealing!! After all kinds of blood tests, treatment for sinus infection, etc. they ordered a MRI. That is when they first considered MS. I had other issues over the years which were explained away, but this led to a diagnosis. I did recover most of my taste, except garlic!!! And making stuffing is difficult, I cannot taste the sage unless I put in a lot. I am so glad I finally got to read about someone with a similar issue!!
  • Rebecca Dickson   Mar 23, 2019 1:26 PM
    Thanks for this, I have had massive taste disturbance and now taste very little so it is good to see it is a real side effect of MS - my MS team need to see this as they don’t seem to believe me!
  • Margaret   Mar 23, 2019 4:46 PM
    Sorry, but I am so glad someone else experiences this! I started MS with half my face being numb 2 yrs ago. Shortly thereafter half my tounge started feeling like I burned it on a hot beverage. Since then I have found the only way to taste things right is to over spice them. Or chew a sharp gum to make the good side of my younger feel burned like the bad side. This us so frustrating to me on a daily basis.
  • Gwen   Mar 23, 2019 9:05 PM
    I also have problems tasting things correctly I need a lot of flavor too otherwise no flavor. It sucks I asked my MD who was kind of like no that’s not a thing with MS I will let them know that it is.
    Thanks Gwen
  • Heather   Mar 23, 2019 10:30 PM
    I’m so glad I read this I have been disgusted by foods lately saying they just don’t taste good! I saw my neuro a couple weeks back because I’m slowly noticing symptoms creeping back up so I’ll be interested to see if I have a new lesion on my MRI that I can attribute. I would have never thought it could be my MS I just figured my tastebuds changed!
  • Mary   Mar 23, 2019 11:29 PM
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