Not sure where to go next...HELP

Posted By: Dream

Not sure where to go next...HELP - 04-29-2020 05:45 PM

I need as much advice as I can get! frown
Feeling really alone right now. I have had the following symptoms since March of last year and the symptoms just continue to get worse.
-Sore tongue...started off on one side in the back, went to the other side and now it's all over the sides of my tongue.
-White coating with 2 red spots in the center that have been there forever. (they hurt also) it almost looks like I don't have taste bud in that area
-Constantly clearing my throat.
-Base of tongue hurts now also
-Ear Pain sometimes
-Headaches sometimes
-Sore throat a couple times a week
I have been to numerous doctors who have put me on several meds, been tested for everything under the sun although no one wants to do a biopsy on my tongue (they say it's just geographic tongue)...but doesn't that even have an underlying cause? And why did it just start after taking antibiotics back in April of last year. That's when this white coating appeared. Have had that tested also and no yeast. I am stumped. I have spent over 5k trying to figure out what this is and it's almost like I am either laughed at or waisted my time traveling hours away thinking I was going to an awesome Doctor to literally just telling me they don't know. I feel like because I am 38 that they think I am too young to have any sort of cancer.
Now...I went to get a CT scan of my neck area and they also put my chest in there..and I do have a couple of masses on my lungs. They have shrank from a 9 to a 7, however now I am experiencing rib pain also. They don't want me to have another CT scan for 6 months to see if it continues to shrink. I have called to see if there were any other tests that they can do and they just tell me to go have an upper GI. But I am really scared that whatever started in my mouth is spreading to other parts of my body. No one will listen to me and I feel hopeless. Does anyone have any suggestions??
Posted By: ChristineB

Re: Not sure where to go next...HELP - 05-01-2020 01:15 AM

Im sorry to see you are back without getting diagnosed! Being its well over a year that you have been looking for help, Im certain you must be beyond frustrated with dead ends, especially when displaying "classic textbook" OC symptoms.

Unfortunately Im not sure we can help you to get any further than you already have gone. There were several replies to your previous posts. Without a biopsy, its NOT easy to get diagnosed with OC! A biopsy really isnt a big deal, its a small snip done to get a tiny sample of tissue. Its sent to the lab where a pathologist examines the sample and makes the determination of exactly what the tissue is. I went back and read thru your previous posts and replies. I saw, several helpful suggestions for seeing an ENT who specializes in treating OC patients.

Somehow I must have missed something you wrote about having a biopsy and what the results were? With seeing so many doctors and going thru so many tests, a biopsy should have been one of the first things done. Im not sure if I missed it or that a biopsy has not been done at all??? A biopsy is what it takes to get a diagnosis, I cant imagine something so obvious could get missed, especially when you have been chasing a diagnosis for over a year! Since your problem areas are visible, there shouldnt be a problem getting a biopsy of "the spots".. Thats the only way to confirm exactly what you have going on. You can see one medical professional after another and if they are NOT the correct type of doctor (as in being an ENT who specializes treating OC patients) its doing nothing but wasting time and money. Im sure they're trying to be helpful, but the facts remain the same... OC is a rare disease, most doctors/dentists have not had someone with OC as their patient. Basically they're NOT qualified with the right kind of extra education and specialized training.

How I wish there was a clear cut path laid out to direct patients thru the diagnosis nightmare. As with any serious diseases (especially OC with only approximately 50% for the 5 year survival rate) the earlier something is diagnosed the easier it is to treat. One thing I noticed when rereading all the old posts/replies was the white patches that started after finishing antibiotics could be thrush. Test results saying the patches are not anything in the yeast family, or that it is NOT thrush. Sometimes its called canadensis, regardless of what its called its in the yeast family which has a great many closely related ailments that have been ruled out by one of your doctors. That issue was a year ago, hopefully its been resolved by now or at least by now it should be healed.

Im very sorry we're not more helpful!!! Im sure this whole ordeal is past frustrating! Nobody needs adding any additional stress considering the pandemic we are all going thru. Please understand, we all would like nothing more than to help you but we are simply not qualified to do more than repeat the info we already gave you. Remember, we are a group of OC patients and caregivers, what we know is from the experiences of going thru things ourselves. OCF members do NOT have medical backgrounds, years of formal medical education, clinical patient experience, your entire medical history and the patient there in person to question and examine (not that we have the qualifications necessary to make use of those things anyway). Also take into consideration every single person is different no matter how much they're a match "on paper". There are ALWAYS variables, something that sets each individual apart making each one of us all truly unique individuals who will react in their own unique way to medications, treatments, etc. Comparing incompatible people (apples to oranges) over the internet rarely will produce new and/or helpful info a year later. Another thing I should mention is the reply I gave to your first post last year, the link to our main OCF site where theres hours of reading whenever you have the time to read thru it. That link is below, maybe theres something there you will find thats helpful???

Best wishes with everything!!!

Main OCF Site, Understanding
Posted By: Dream

Re: Not sure where to go next...HELP - 05-03-2020 08:29 PM

Thank you Christine for your reply.

I have never had a biopsy although I have insisted it with several Doctors and all of them say it unnecessary as they think what I have is Burning Mouth syndrom, geographic tongue, misaligned teeth and the latest I was diagnosed with is reflux. Which I have no burning in the chest.

It's hard to get someone to give you a test (biopsy) even though it's coming out of your own pocket.

I have an upper endoscopy scheduled because they think that this all relates to acid reflux but I just don't think that is it. I know what reflux feels like as I had it in my earlier years from eating bad foods.

The Doctor that I saw last did a swab of my mouth and sent it for labs to see if there was bacteria. But I don't know if that will really help. It is very frustrating.

I did also see someone that recommended a specialist in St. Louis that is an ENT that specializes in OC. I drove 2 hours to see him basically for him to laugh at me and send me on my way. frown
Posted By: gmcraft

Re: Not sure where to go next...HELP - 05-03-2020 08:53 PM

If you have seen an ENT with specialty in oral cancer, maybe it’s time to put some faith in the doctors and stop torturing yourself. These doctors have seen a lot of oral cancer and will probably know when they see it. Maybe if you focus on sorting out the stomach issues, then the discomfort you are feeling will go away.
Posted By: Dream

Re: Not sure where to go next...HELP - 05-04-2020 07:23 PM

The issue is that I have had a white coating and pain in my tongue with a cough that feels like I always have to because there is something in my throat for over a year. This is my main concern although I do have more issues going on now. Feeling like this all started in my mouth but it's spreading. But I am having an Endo appt coming up also.
Posted By: ChristineB

Re: Not sure where to go next...HELP - 05-05-2020 03:55 PM

Im sorry you are having such a difficult time obtaining a diagnosis no matter what it will be! It must be very frustrating and upsetting to search so long without making any progress. The stress you have been under is NOT good for anyone, it negatively impacts the situation making everything so much more difficult.

As previously mentioned having a white coating in the mouth often is thrush or some variant of it which is a very common condition. Even a general family doc or dentist can evaluate and treat thrush if thats what you have. Im guessing at different scenarios while trying to be helpful, but its NOT something anyone here does. Reality of the situation comes down to the fact of obtaining a diagnosis over the internet is just not possible. We are not the right people and do not possess the necessary qualifications to support the level of assistance you are seeking.

I went back thru your posts as well as all the replies given with members trying to help. Ive spent a great deal of time and energy trying to figure out what anyone here could do to help you get to the bottom of what was causing your medical condition and symptoms. This was the second time in the last couple days Ive reread everything posted, previously I went thru all posts a year ago as well. The more I read thru your posts, all replies received and your replies back to the other members suggestions, the more I am convinced its counterproductive to continue posting about your continued search for help. Its pretty much the same things worded slightly differently asking a group of people who are not qualified to assist you for help. We have immense compassion for your situation but as you know, we are NOT medical professionals which is what you need to obtain a correct diagnosis of whatever you have. It could be any number of things that have yet to be discovered or ruled out. Bottom line is no matter how much we want to and attempt to help, its not possible.

One other thing that caught my eye I must bring to your attention is the mistrust displayed towards the many medical professionals you have dealt with. After going thru so many appointments and tests with so many different specialities it isnt easy to put faith in any of the doctors you are speaking with. Please remember, the medical professionals are just people who have gone thru many years of specialized education in their preferred field of study. They should have worked with patients that werent always the easiest to diagnose. At this time with the pandemic making such a gigantic impact on everyone in the world's lives medical staff is stretched thin and appointments could be scarce for non-life threatening illnesses. Also I thought way back to when I was first diagnosed 13 years ago and remembered no patient likes all the doctors they interact with. Not every doctor has a great bedside manner but personality doesnt impact their ability to treat their patients. Several mentions of not believing what your medical professionals tell you shows your significant mistrust, no matter what the medical professionals say or suggest you dismiss it saying you dont believe them or you know better.

Considering the high level of mistrust of medical professionals, its highly unlikely anything coming from a group of OC patients/survivors and caregivers who do NOT have medical degrees or backgrounds would be considered helpful. At OCF, we only know what we ourselves have been thru, our own first hand experiences for our own specific situations... this in no way could help you to obtain an OC diagnosis. When patients discount advice from experienced medical professional after medical professional all of who sound like they are qualified to do their job by doing the mandated routine medical tests trying to rule out the most serious health conditions, theres nothing anyone here or anywhere anyone else can do. In my previous replies, Ive given you the link (twice) to read more about OC, diagnosis, tests, other mouth conditions, etc on our main OCF site's Understanding section. As always, the info found on OCF's main site is correct, up to date, factual science based material. You may find it helps but its up to you if you bother reading thru whats written there. The only other suggestion I have is you may benefit from seeking out a mental health professional to help you overcome your mistrust of medical professionals. It certainly couldnt hurt to have someone face to face to confide in and help you decide what other options you have left.

Im sorry to say thats all we can offer for assistance to your particular situation. Going forward I wish you all the best with getting to the bottom of whats behind your medical issues.
Posted By: Dream

Re: Not sure where to go next...HELP - 05-19-2020 11:46 PM

I had an MRI done of my neck and jaw area. It's hurting really bad right under my jaw...I guess that is where the lymph nodes are. Hopefully I will have some answers this coming Friday.
Posted By: Idaho Native

Re: Not sure where to go next...HELP - 05-29-2020 04:12 PM

I am so sorry for the pain. And, the waiting is the worst! Anxiety sucks. I went from having the occasional earache, to some jaw pain ( thought i was having a heart attack) to finding my tumor. Then it was wait to see the ent, wait for biopsy reaults, wait for ct results, wait for surgery. The waiting sucks, and the pain got worse. Ugh.....hang in there. I felt like I was on the crazy train and hadnt even gotten to the tunnel.
Posted By: Dream

Re: Not sure where to go next...HELP - 06-12-2020 12:56 AM

What test helped you find out your results. I have had everything except a biopsy but no one thinks I need one but I have had these spots on my tongue for a little over a year now and they are not getting better and are painful. frown
Posted By: Dizz_zzey

Re: Not sure where to go next...HELP - 06-18-2020 07:36 PM

A biopsy is the clear proof you have cancer. The spots could be oral lichen planus, which is an imflammation. You could have inflamed taste-buds from hurting them with hot or spicy food and they're not healing.You might have neuralgia, which is nerve pain.There so many things the bumps could be.
Posted By: Dream

Re: Not sure where to go next...HELP - 06-23-2020 02:17 AM

I am seeing an oral surgeon on Wednesday and hoping that they will do a biopsy just to make sure that this isn't cancer. I have stayed away from sugar and all spicey foods, changed my toothpaste, drink nothing with sugar in it and I still have this pain.

I am praying that they will at the least just do it and see what it could be. I have had this for way to long. This all started with a sore throat back in March and then was put on antibiotics and steroids for a month and got oral thrush. I still have the white coating on my tongue but it's not oral thrush as I was tested for that..2 red spots in the middle that have been there for a year and they are more painful and seems to be getting bigger. I also have pain on both sides of my tongue now where it was only one side before. This has now spread to my nasal passages and I have really bad dry eyes and dry mouth a lot also. I have been tested for Sjogrens but it came back negative.

I had a CT scan with contrast so we will see if this comes back with anything here in a couple of days. Just frustrating that no one knows what's going on but I literally don't even want to eat because of the pain. frown
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