Coated tongue - like thrush - anyone know anything?

[sesl]

My mother has ALS, with lots of bulbar symptoms. Lately she has been inadvertently biting the insides of her cheeks when she tries to swallow. This has caused her a lot of pain with her cheeks being quite cut and chopped.

The whole inside of her mouth is quite hacked up, which is making it very hard to eat (as if it weren't hard enough with ALS).

Then about 2 days ago she stuck out her tongue and it is coated with creamy yellow stuff, and she says her mouth tastes foul. She's currently in hospital having a peg inserted, so I said to the nurses that I thought she had thrush. That's what it looks like, and the nurses agreed. So they started treating her for thrush. The doctor had suggested she get a simple mouthguard to wear at night to help stop the accidental biting. But we didn't want to put the mouthguard in if she had thrush - not until it was cleared up.

Then today her MND specialist-neurologist-guru visited and he said that he thinks it might not be thrush. It might be "something that ALS patients often get." I asked him what that "something" might be and he said he doesn't know but it often happens wih ALS.

I said (in horror) "does that mean it might not get better" and he said "we'll just treat it for thrush and see."

This "something" makes her mouth taste foul, hurts and causes her tongue and throat to burn when she tries to drink water (which she has thickened) or juice.

Has anyone heard of this thing that looks like thrush, but isn't thrush, but is something that ALS patiensts sometimes get? What is it? Is there any way of helping her?

sesl

 

[LauraW]

This exact thing happened with my Mom. She was treated for Thrush...(which is from malnutrition.)..with antibiotics and a tongue wash. It went away. When she gets her peg you might want to do some probiotics...from yogurt or you can buy them in capsule or powder form. I give mom this every day. I don't know what that other dr is talking about but I tell you this from experience...it is from malnutrition!

 

[indigosd]

This is a post some time ago by our Fabulous Bethu! If you put "thrush" in the search bar there are many similar posts. :smile:

#1 (permalink)
BethU
Extremely Helpful Member
Registered Member

Join Date: 2008
City: Los Angeles
State: California
Country: USA
Diagnosed: 05/2008
Posts: 2,591
Thrush (not an ALS symptom)

--------------------------------------------------------------------------------

Hi ... I have a new criterium (is that correct? Can't tell my ums from my es's) for judging doctors: Do they relate to the whole patient, no matter what their specialty may be?

It was an ENT who put together my slurred speech with my tongue fasics and said "Get thee to a neurologist." My PCP had never noticed fasics.

It was my UCLA neuro who commented on my posture and suggested I probably have compression fractures on my spine. I had commented several times to my PCP that I have lost almost 4 inches in height in the last few years, and had never even gotten an acknowledgement that I had spoken.

Tuesday, it was my pulmonologist who diagnosed me with thrush, as we discussed why the BiPap was so very uncomfortable ... it made my mouth and throat burn horribly, even more than usual. They have been burning like that since about November. When I came home from my last clinic visit at UCLA in December, my mouth was filled with blood, which was still flowing and seemed to be coming from my cheek. I figured the mouthpiece for the lung function test must have irritated the cheek.

I had 4 or 5 more episodes of bleeding in my mouth since then, so I changed the diagnosed to oral cancer, and I planned to see my dentist about it one of these days. In fact, I have a letter half-written to him explaining why it's OK for him to examine and treat me, despite the ALS. I was still attributing the pain in my mouth and throat to the Scop patch and dry mouth.

I couldn't mention the painful throat here, as I figured if I did, every 22 year old in the Northern Hemisphere with sniffles would Google sore throat and end up here, sure they're dying.

Anyway ... I'm now taking an anti-fungal med (with the flashlight, I can see white spots in my throat. I can also see streaks of dark red on my cheek, which I assume is the source of the bleeding. I asked the pulmo what thrush looks like, and he said very red and angry looking, which sure describes my tongue and throat.

He also said it was probably a B vitamin deficiency.

I had only heard of thrush in terms of HIV, but Dr. Google says malnutrition can cause it, as can an impaired immune system in serious illnesses, poor fitting dentures, etc. My mouth has changed so much that my partials don't fit at all now. So I was right ... this does call for a trip to the dentist !

So, the anti-fungal is working ... the pain has almost gone away. I had stopped taking vitamins for several months, including the Bs, which my cardio said to take. Everything was just too hard to swallow. But now I'm swallowing pills with yogurt and it works great. I'm going to go back to making fruit smoothies with supplements and will use the tube, since I can't stand the taste of the supplements.

And hopefully, when I get new settings on the BiPap and a well-fitting mask, I'll be able to actually use it.

And life will be wonderful, (except for the ALS).

Moral: (Wo)man does not live by ice cream alone.

Again ... if you've read this far, you're probably roaming around Google with 6 symptoms in search of a disease, A SORE THROAT IS NOT A SYMPTOM OF ALS.
__________________
Bulbar onset March, 2006
Dx ALS May, 2008

 

[abcde]

You should be able to remove the creamy yellow stuff carefully with a toothbrush or a tongue scraper, maybe once or twice a day. Keeping hydrated should help also if it is thrush.

 

[BethU]

Sesl ... I was treated with an anti-fungal med for thrush, prescribed by my pulmo when I told him I couldn't use the BiPap because it was so painful ... my mouth and throat burned constantly, and the forced air made it worse.

I didn't have any coating, but he said my red tongue and throat were proof it was thrush. It helped briefly, but the burning recurred, and the anti-fungals didn't help at all when I tried them later.

My primary doctor diagnosed the burning as reflux, and put me on Zantac, and the burning has stopped. What a relief. I also have a persistent foul taste in my mouth which is very unpleasant. It's a kind of meaty, salty, chemical taste. So in my case, there were two problems ... the burning, and the taste, which I attribute to the degeneration of my throat muscles. Your mom may have a couple things going on, too.

I believe there could be many causes for a coated tongue, and malnutrition could certainly be one of them. If the thrush medication doesn't help, I'd look around for other causes, and not let your neuro just shrug it off. A dentist might have some insight into the problem, too.

 

[GlenBrittle]

There was a thread on this , I think Beth started it.

Apple Cider

Glen

 

[Gelthling]

Mum has had a coated tongue for a few months now, we've tried many things - probitics, yoghurts, cola, bisoda, drops for thrush..all to no avail. The doc just keeps telling us to try the natural things - but It may be she isn't getting enough fluids etc......its a hard one in our case!

 

[brooksea]

Revisiting this Thrush thingy!

My husband was in terrible throat pain and I got him in to see his GP yesterday. He is now on an antibiotic and anti-fungal for systemic candidas. She says this is caused by the excess secretions. His throat and ears are infected. We thought we had this "licked," but obviously we know nothing about the power of Thrush!

I had no idea this could be a Thrush thing, as my son was also sick with a sore throat and we just thought they both had the same thing.

My husband is on Lexapro for EL and cannot take it while taking these drugs for the infection. (Don't know why, as I wasn't at the Dr. appointment - I was picking up my son from school because he was sick.) This will be a great week! Not!

 

[cara]

My mom had the same thing. I never even thought of thrush. I used to scrap her tongue but it didn't really help. It totally went away on its own when she got a PEG. She only ate 1 time after getting its placement.

 

[BarryG]

I went to my dentist about a month ago and he told me that I had thrush and prescribed Nystatin. After two weeks of squirting that stuff in and trying to not have it all just drool out that was done. Now because I didn't know that I had it in the first place I decided to go to the doctor to see if it was gone. She looked in my mouth and said she saw no sign of thrush and questioned whether I had it in the first place because I had no pain or bleeding, just white gunk in my throat.

So a couple of days after my suctioning/gagging/barfing/choking episode I decided to have a look for myself. I got a flashlight and stood in front of ths mirror and sure enough, there is a whole bunch of white goo in the back of my throat and still no pain except that my throat hurts from being dry (mouth breathing). So this time I very carefully dragged some out with the toothbrush and suctioned more out while using the flashlight and that really helped. I find that a coarse towel is the best thing for my tongue and the roof of my mouth, my toothbrush doesn't do it.

I also got a humidifier for right beside my bed so that the air is moister and my throat doesnt get quite so dry. Do/did I have thrush? I have no idea but I do have gunk!

 

[BarryG]

An update, I decided to try my water pic cleaner on the mouth/throat goo and it works! After I started looking in my mouth with a flashlight and mirror I noticed that the back of my tongue and throat were coated with white gunk which really caused me gagging problems especially at night.

The water pic allows me to get a small amount of concentrated water right to the goo and rinse it out. What I do is bend over the sink and put the cleaning wand into my mouth (at the lowest pressure setting) and aim it at the back of my throat. Because it is a small amount of water and I am bent over I don't have any (or almost no) choking and the goo (and the water) just runs out. This might not work for everyone but for now it sure does for me. And I can whet my mouth and throat with it too!

Here's a link to what I use

Ultra Dental Water Jet WP-100