Hi I;m new here and have not been diagnosed with any thing with my major issue,
I have just finnished hep c treatment,
taking interferone and ribaflrin combo for 48 weeks,
In the week of the thirties , I started getting this weird feeling in my mouth, with my gums..my gums are feeling like this..
first of all my dentists and oral patholist ,and liver docor have not come to a dignoses as of yet,
All i keep hearing is ,
I cant see anything your describing
the feelings i have are this
My gums ,are or go through this soggy, waxy,gummy,ripping tearing , its terrible,

I;ve had several cleanings, the oral patholist has said to try chewing gum..
he said he thought it may be something to do with my saliva, and dry mouth,
which is not right and i told him he was wrong, but i did try his solution and still, my gums are kinda thinly growing over my teeth, like a kinda filmy waxy,soggy,sticky problem,
both upper and lowers on the inside's it also ripping a tearing into the cracks of each teeth and skin getting stuck inbetween them all!

I also had some complications with my lungs off and on, heavy coughing and phlem, the phlem is differennt colours at different tiomes, when the coughing starts and i start spitting stuff up, its a yellowy limy green colour,
I had gotten 3 different chest xrays, first one I was told it could be some type of bacterial infection or viral infection, the i got a call back to redo the xrays again , as the radiolist was concerned with questionable pneamonia..
In the meantime i had been seeing the dentist, they had not understood my explanation, or what i was explaing was happening..

With that i was sent home,
with well the cleaning will help

Well it didnt and thats now been approx 3 months now
I was then sent to the oral patholist and told to chew gum, as my saliva may not be keeping my gums mist enough, and the chewing gum should help!
Well it didnt..
also the dental heigentist was showing me some plaque on one of teeth , after she cleaned that tooth i said
ok, now go back to that tooth and you'll see it packed with skin from my gums or even more plaqe..
as it happened i was right
but
she didnt seem to think still i have any thing wrong with me

holy!!
just advise on more brushing and flossing that it was plaque!
omg
if i hear plaque 1 more time!


im going to scream..
Now I've tried chewing the gum its not worked
also i'm thinking maybe its an autoimmune thing..
so got an ultrasopund done, it came back enlarged spleen, splenagoly (sp)
homogenous but oversized,
As i mention i have or had hep .c i will find out in about a month if i'm below detecteable levels..
also the liver doctor did a bunch of autoimmue tests
the 1 that came back positive is anti smooth muscel antibody , at 1:20 BEING THE TITER

Now the only test that he ordered was the after tx blood work and another to see if i may have to much iron in my liver..

I'm going crazy with this happining to my gums and mouth
its again a sticky kinda gummy ,waxy, rip and tearing and the skin gets inbetween my teeth cracks,
i drink plenty of water
as thats all i drink

I keep getting things told to me , like
umm never has any of my medical workers ever come across at what my condition is,

ITS even seeming on some occasions like hair is coming from the blistery type of inflamation ,
its so hard to explain,
i have no bleeding, its not a inflamation really, but its skin that keeps regenerating itself , over and over as the other skin leaves..

I say blistery, and inflammation cuz i consider this to be skin that shouldn't be doing this,

I've tryed antibacterial mouthwash, the chewing gum
my treatment has stopped so I'm not taking the meds anymore..

I can go on and on,
but so far as anyone ever heard or known anyone with this type of issue or something close,
I'm going crazy
just imagine ,if say, a peice of meat was stuck between each tooth and ya can't get it out!

One feels so helpless, my aniety levels are higher now
i cant seem to get anyone to listen
the dentist says well see the doc
the doc says see the dentist!
omg
i really need some help
something, anything
anyone?
Also i have been getting blood work done, and my red and white counts seem to be in tact!p.s i also have a type of ,what the dentist calls it on my uvala ,not a cyst look by some extra type of skin growing from the uvala..
that was dignosed about 1 to a year and a half ago, i went to an ears nose and throats specialist, he said nothing to worry about!
same when i went on friday to dentist to get a repeat cleaning and check up
that to the dentist it looks like a peice of skin hanging from the uvala.and he wasnt concerned about it!
if it was hard or inflammed or even soar he might consider doing something,but that some ppl just grew extra skin there..
is this true?!


plz if anyone can help
i'm ready to listen!
thanks shelly

This message has been edited. Last edited by: shelly,

Hi again
I've noticed that nobody, can help me..I still have the feelings, plus worse,

Could it be possible either cat hairs, any type of fibres from filters of ciggerettes could be sucked in my gums ,it feels like either cat hairs, or dental floss shavings or some type of stringy material is swishing in my saliva ,trying to get out..plz help

HI,

I AM VERY SORRY NO ONE REPLIED TO YOU...I READ YOUR POST AGAIN...I AM SENDING IT ALONG TO MY SISTER IN LAW, SHE IS A DENTAL HYGENIST AND WORKS IN BALTIMORE FOR A VERY PROMINENT DENTIST...WILL SEE HER ON TEUSDAY...BUT WILL CALL HER AND SEND ALONG A COPY OF YOUR POST TODAY...

I AM SO SORRY THAT YOU ARE GOING THROUGH THIS...HAVE YOU CONSULTED AN ENT? AND ARE YOU CLOSE ENOUGH TO JOHNS HOPKINS TO INQUIRE THERE?

THEY ARE ALWAYS ON THE CUTTING EDGE OF RESEARCH AND HAVE THE BEST MINDS IN THE COUNTRY WORKING THERE...

WITH WARMEST REGARDS,
JO

Oh Jo,
that would be so helpful
,if someone could , even give me a bit of hope...

I live in Ontario, Canada..
This has been the worst thing i've ever had to go through on a daily basis,
anything would help...

thanks so much for answering my post,
you have no idea what this means to me.
shelly
xx00

Hello Shelly

Sorry, I was out all day. It was a Saturday and I was out visiting. And some questions require much more thought!

Mucosal sloughing that can affect any area of the oral cavity, including the gingiva, palate, buccal could be due to irritation from an oral care product like a mouthwash or toothpaste. Sometimes it is caused by chemical burns (aspirin) or heat burns (pizza). Sometimes it is a manifestation of an autoimmune disease e.g. pemphigus disease group where the mucosal blisters are broken easily and so observed rarely as observed in cases of mucous membrane pemphiod.

Your oral pathologist should be able to investigate for the several conditions that can cause this sloughing. The good thing is that it is leaving you with ulcerations. Sometimes no one knows the answer and coping best with the problem is all we can do. Let's hope it is a passing thing and things get better either through a diagnosis and treatment or by itself.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

OH thank-you so very much for the link..

In your opioin can any of what you sent be invisible to the eye?

As I'm told by all , (dentist, oral patholist maxifalicalist)that they cannot see anything, my gums look healthy, no inflamation ,no bleeding , teeth are strong and look healthy..other some receeding in some areas..

The patholist did not want to do a gum biopsy due to these reasons,

He said ,if the gums were either discoloured or inflammed or swollen,he'd be more apt to do a biopsy, but since they looked normal,his reply was he did not want to put me through such thing..
I'm thinking because this is not visiable to the eye,he would be more apt to do a biopsy..

He also said i work on dead ppl as well as live and know that a biopsy would show me nothing, due to the things he mentioned, such as no inflamation or bleeding or discolouration,
I then asked, ok , now what?
Who should i then ,now go to..
His reply, I'M SORRY , BUT i'm it, the TOP OF THE LINE,

I asked him , how about a dermatolist ,he said nope i do that to..

I dont no where to turn..
I'm wondering what other type of specialist i can see for this!

thank u so much for answering my thread dr,

Get a second opinion from another oral pathologist as no one (including me) gets it right every time.

Hiya Shelly. Ive just read your post in its entirety and I feel the stress you are going through with your complaints. It sometimes feels like nobody can grasp what you are feeling. I've been through a rotten few years myself. I do hope its nothing serious and as long as they continue to find nothing that points toward cancer then thats a bonus. Radiotherapy for oral cancer is most unpleasant and would leave you with worse mouth/gum problems than you have now. Keep us posted Shelly and hey.... good luck with finding a solution to your condition.

Oh Wow, thanx Steve,
I have just been to my family doc, he took some blood work ,
He said he wanted to rule out any possible autoimmune stuff first, then if alls well
He will refer me to an oral surgen , My fam doc hssn't yet treated this, It was my Dentsit who, in the past sent me to the other specialist,
so now i'm going my family doctor route,
I will keep you all posted in the outcomes, and thanx so much for caring .
take care
shelly

Hi IM STILL IN THE SAME BOAT AS BEFORE, WITH NO ASNWERS TO MY QUESTION'S.i'VE BEEN TO 2 OTHER ORAL SURGEONS AND THEY SAY THEY CANT SEE WHAT I FEEL, NO KIDDING SHERLOCK!! AND REFUSE TO DO A BIOPSY, SAYING IT WOULD NOT REVEAL ANY ANSWERS.. OH ITS SO FRUSTRATING..

NO PROFESSIONAL CAN HELP ME, WHAT DO I DO?
NOBODY IS TAKEN THIS SEROUIS EITHER .ITS SO FRUSTRATING
ANYBODY WITH ANY ANSWERS PLZ HELP ME!
THANX
SHELLY.