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BethU

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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.
 

crystalkk

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Beth,

Do you ever catch a break........
 

BethU

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Well, at least I've got something curable for a change ! :lol:
 

John1

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Beth,

I took the antibiotic minocycline for years when it was touted as an ALS therapeutic. Only after a long trial did they determine "oops, sorry. It actually speeds up progression". During that period I was plagued by thrush because the antibiotic killed all the beneficial flora too. I kept it somewhat under control with antifungal meds and yogurt.

Glad you have it licked.

John

p.s. I think the word you wanted is "criterion", singular of "criteria".
Oh yes, I meant to add that I always enjoy your posts. You ferret out the humour in situations where most of us see only misery.
 

hopingforcure

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Hi Beth,
not a 22 year old nervous Nellie here, although I wish I was sometimes.lol
I am always biting the inside of my mouth and tongue and lips, they are swollen, bloody, and just sore.. I was always scared to mention this did not want to scare anyone else, but this is a MND problem.. And as far as thrush I have heard of some of us being affected with it, sorry to hear you have another thing to deal with, and please do not worry about scarying other's, to many people worrying needlessly anyway.. I myself would have enough to worry about, without the ALS, and would like to be that way.. Trust me I have plenty of other things to worry about...Thanks for sharing, hope you get some much needed relief..
 

rose

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Beth, thrush is miserable! I'm sorry it took so long for you to have someone recognize the problem.
 

BethU

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Thanks, John1 ..

p.s. I think the word you wanted is "criterion", singular of "criteria". That's what I wanted all right ! Maybe one of these days, I'll tackle who and whom again. :lol:
 

lydia

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Hi Beth,

FOUR INCH loss in height and no comment from your doctor? I was making such an astonished face while reading it that my son yelped when he saw me :)

I am sorry you went so long with the thrush. I had a family member with that (due to compromised immune system) and remember it was pretty awful.

Lydia
 

rose

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OK Beth, you dragged me in.....
Who is subjective, and whom is objective,

So: If it's either “he” or “she,” then it's “who";

if it's “him” or “her,” then it's “whom.”

I think this is actually a little bit too simplistic, but it works well enough for me. I do a little comparison in my mind, and correlate the vowel ending with a vowel ending i.e. He with who... him with whom.

She did it.... would be the answer to who did it.

To whom does this post belong.... it is hers....

I'm pretty sure you could have explained it better, but I did my part, pulled my weight a little, and now I think I need to go have a glass of wine and watch some mindless TV....
 

brendapals

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I guess I will have to stick with easier english, but fun to say...


Why do we park in a driveway, and drive on a parkway?

Why do we sit on a couch, but in a chair?

clearly, it's midnite here, and I've apparently lost my mind,
beth-glad the thrush is getting better
take care sweetie,
-b
 

laurel

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Hi Beth,
What next eh? I know our horses have seasonal episodes of thrush due to our rainy climate, and I give them probiotics regularly now. I can suggest Dr. Udo's probiotics. The yogurt is a good idea, but they probably won't have enough good probiotics in them over the long term. Hubby has CIDP and compromised immunity and I give him a Dr. Udo's probiotic every other day, and actually my horses do get probiotics daily in their mush over the past six months and this stopped any thrush for them. You can open the probiotic capsule and shake the stuff into one of your smoothies. Concerning the loss of height. Have you had bone density checked regularly? I know you don't need something else on your plate, but that shrinking is a prime sign of loss of bone density. There are lots of preventatives and even drugs to help repair bone loss. My GP always says she gets focused on my MS and often forgets to check out routine stuff like bone density and pap smears, and I'm sure that happens with people who have ALS. You are in my prayers Beth. Oh I almost forgot--try to not use mouth washes overly much as they do disturb/kill the good bacteria in your mouth--rinsing with a weak salt water is better.
Laurel
 

rose

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Brenda,

In the Pittsburgh area there are a chain of restaurants (similar to a Dennyy's or Bob Evans) and the name of it is Eat N`Park. So backwards..... they have the best bear claw pastries :) one of those heated up and a few cups of coffee YUM!
 

BethU

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Rose ... thanks for the grammar review. Very clear and helpful. If you ever need a quickie on the American usage of "that" and "which" and which require commas, I'm your gal. :)

Laurel ... good advice. Didn't know about the mouthwash. I've used salt water in the past after dental procedures, and its very soothing. The yogurt's only for swallowing pills and a few extra calories, but your advice sounds good.

And, yes ... After the neuro pointed that out, I went to my PCP and asked for a bone-density test, which I've had in the past, but not recently. Since I'm in danger of falling with ALS, I figure I'd better get this straightened out.
 

rose

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Beth, that area of grammar is one which I am not all that certain about, not to mention usage of the comma... or semi colon.... then there is the whole preposition conundrum... I used to know a great joke that involved a blonde and a brunette and sentences ending with a preposition, but all I can remember now is that it was funny. 8)
 

brooksea

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My husband has been struggling with Thrush for several months now. He has a very annoying symptom that is driving him crazy. He constantly feels as though there are particles of some sort in his mouth (like sand).

He's gone through two rounds of Nystatin "swish and swallow." The neuro has now prescribed Nystatin "lolly pops." Hope they work.

Although Thrush may not be a symptom of ALS, it is a very bad condition to have with ALS. My husband is unable to taste foods and has lost his appetite. The irritation in his mouth makes him over work his tongue. He's got to gain the weight back or he will be prime candidate for PEG.

If any pALS thinks they may have a yeast infection, please get it seen about right away! You do NOT want to lose weight when this could be treated!
 
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