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-   -   I have a question? (http://www.healthboards.com/boards/sj-grens-syndrome/905758-i-have-question.html)

NBY 06-19-2012 09:58 PM

I have a question?
 
Has anyone on this board ever had a salivia gland biopsy that came back positive for sjogren's syndrome, and then get sent directly to an oncologist?

tgrpam 06-23-2012 09:26 PM

Re: I have a question?
 
HAd one this past Wednesday, only took 2 tylenol for same day pain - no stitches, was very easy!

NBY 06-23-2012 09:35 PM

Re: I have a question?
 
I had stitches and I still can't feel my lip, he opened up my salavia glands because they were sealed shut. my biopsy came back positive for sjogren's syndrome. I went to the oncologist, who is sending me to a rheumy. The oncologist said they would probably see me back because I have something growing on my collarbone, that is now the size of a tennis ball. She said she wanted to asperate it, but she wanted to send me to the rheumy first. why do you have to go in circles, when you go to doctor's why can't they send you where you need to go the first time? At least I know what I have. Good luck everyone i hope you feel better soon.

Beerosie 07-17-2012 06:48 AM

Re: I have a question?
 
[QUOTE=tgrpam;5005500]I had one this past Wednesday, and was very simple, no stitches, only had to take 2 tylenol. Today, no pain at all. recommend the sjogren's research clinic @ UCSF, they did all kinds of testing and i will get results in 4-6 weeks. you can find their website online.
good luck![/QUOTE]
What tests and how were your results?

NBY 07-17-2012 02:13 PM

Re: I have a question?
 
To make a very long 3 month story short. I went to the Rheumy and she said when she ran my blood, mind you I have a positive (for sjogren's) lip biopsy, that I do not have sjogren's syndrome because of my blood work, it came back that I didn't have an anti-immune, but my white blood cell count was high and I had inflammation. That is what my tests showed, I am going back to the Hematology/Oncologist tomorrow for more tests. My rheumy said that she thinks I have lymphoma and that I am waisting time seeing her, but I haven't been diagnosed yet. That is what is supposed to happen tomorrow. Hopefully, it's something else. Truelly people I feel like I have been dicked around for the past 3 months with these doctors. I really hope for their sakes that I have not waisted 3 months that I could have been fighting for my life.

Beerosie 07-17-2012 06:02 PM

Re: I have a question?
 
Well I would think that a positive lip biopsy; means just that. Also I've read that with SS we are at 40% greater risk for Lymphoma.

NBY 07-17-2012 08:12 PM

Re: I have a question?
 
Honestly everyone i don't know what to think about all of this. My lip biopsy was positive and showed i had sjogren's. Blood tests were negetive for sjogren's. I was flabergasted when my doctor (rheumy) said that i do not have an anti immune disorder at all, and that she "thinks" i have lymphoma. i mean what do you say to that, i just looked at her and said and i quote, "if you don't want to treat me i can leave and find someone who will". She said she treats sjogren's and even though my biopsy said I had it, that the blood test was the determining factor. Everywhere i have read says the biopsy is the determining factor??? Am I wrong?? I understand that people that suffer with sjogrens have a 40% greater chance of getting lymphoma, but apparently I don't have sjogren's, according to the rheumy. She said she treats symptoms of sjogrens, mostly dealing with glands, not lymph nodes, and that i needed to go to the hematologist/oncologist. I am going tomorrow. I pray that I will get more answers tomorrow. I am just frustrated to be told I had sjogren's and there is a "possibility" i could have had lymphoma for the past 3 months. That is terrifing to think that I may have slipped through the cracks. I will let everyone know good or bad the results that i find out, and pray that no one else gets done like me. No one deserves to be lead on like this, and if there is a possibility that my possitive sjogren's lip biopsy was actually lymphoma everyone on this board deserves to know, especially the new people that has to go through this horrible process of being diagnosed with whatever is wrong. Good luck everyone and don't settle for covering the symptoms, fight for a cure. If it turns out i do have sjogren's after all, I will be on the front lines fighting for one.

MsMarty 07-18-2012 07:11 AM

Re: I have a question?
 
It seems to be defensive medicine. I had the aspiration in my parotid, confirmed Sjogren's and I had swollen lymph nodes all around my collar bone. Sent me to an oncologist who said it was an over-reaction, and prescribed lymphatic drainage massage by a licensed therapist. I got a prescription for the massage therapy, and go twice a month for 2 hours. She has kept all my lymph nodes from blocking, and also helps with overall dryness, inflammation, and circulation. (Don't use those machines, lymphatic massage is an extremely light touch, and requires years of training.)

NBY 07-18-2012 05:48 PM

Re: I have a question?
 
Well I went to the hemotologist/oncologist today. Before I get into what he told me, last week I had a CT of my chest it was completely normal but didn't show my super clavical (collarbone area) so Monday I had another one. This morning when I was getting ready to go to THE appointment, the doctor called with my results from the CT I had monday, and I have Atypical pneumonia of the upper quadrant of both of my lungs. That was not good news with everything else that has been happening to me. I went to this hemotologist/oncologist to sum it all up he said that the other doctor's I have seen had been splotchy with their work so he wants to do everything and then diagnose. so more blood work, and another CT this time of my abdomin area. I will know August 1st, he said he would leave no rock unturned and that I was a sick girl (I am 40 by the way, but whateves). But that we would have a diagnosis my fingers are crossed. BTW he was very confused about the lip biopsy coming back positive and the rheumy's blood test coming back negetive, so we will see.

Beerosie 07-19-2012 05:32 AM

Re: I have a question?
 
[QUOTE=NBY;5022421]Well I went to the hemotologist/oncologist today. Before I get into what he told me, last week I had a CT of my chest it was completely normal but didn't show my super clavical (collarbone area) so Monday I had another one. This morning when I was getting ready to go to THE appointment, the doctor called with my results from the CT I had monday, and I have Atypical pneumonia of the upper quadrant of both of my lungs. That was not good news with everything else that has been happening to me. I went to this hemotologist/oncologist to sum it all up he said that the other doctor's I have seen had been splotchy with their work so he wants to do everything and then diagnose. so more blood work, and another CT this time of my abdomin area. I will know August 1st, he said he would leave no rock unturned and that I was a sick girl (I am 40 by the way, but whateves). But that we would have a diagnosis my fingers are crossed. BTW he was very confused about the lip biopsy coming back positive and the rheumy's blood test coming back negetive, so we will see.[/QUOTE]

I don't want to stir things up; BUT....why in the world are they doing a CT of the abdomem? If you are not having abdominal pain and they don't feel a mass? You are being exposed to a huge amount of radiation.

NBY 07-19-2012 08:24 AM

Re: I have a question?
 
Oh please, don't even think that way, your not stirring anything up. I value everyones thoughts. He is doing a ct of my abdomen because my spleen is enlarged, but my bloodwork is normal, and when he pressed of course it was tender. I didn't even know it was until he pressed it, and honestly I think he is fishing a little, but that is my opinion. At this point I will do anything to find out what is wrong.

NBY 07-20-2012 06:59 PM

Re: I have a question?
 
Having an emergency CT of abdomen and pelvis first thing in the morning. They found another lymph node in my groin that is full, and something is wrong with my spleen or pancreas. Wish me luck, still not diagnosed.

ladybud 07-20-2012 07:06 PM

Re: I have a question?
 
A salivary gland biopsy can help diagnose Sjogren's but a rheumatologist is who treats that, as it is not a cancer of any type, it is an autoimmune disorder. Not everyone with Sjogren's has a positive blood test for it, only about 70% do, so I would put more faith in the biopsy.

Beerosie 07-20-2012 09:02 PM

Re: I have a question?
 
[QUOTE=NBY;5023999]Having an emergency CT of abdomen and pelvis first thing in the morning. They found another lymph node in my groin that is full, and something is wrong with my spleen or pancreas. Wish me luck, still not diagnosed.[/QUOTE]

I know you are worried but try not to get crazy with all that's running through your mind. Remain possitive and think good thoughts.
This has all happened very quickly for you hasn't it?
If you could say; what was the single first symptom that led you to a doctor appointment?
Wishing you good news, keep us posted:angel:

NBY 07-21-2012 10:01 PM

Re: I have a question?
 
You know it is really hard to do, but I know you are right. The first symptom that led me to the doctor was I woke up one morning and I couldn't swallow, I thought I was having an allergic reaction because this allergy season was really bad, I went to the doctor the doctor said my salavia glands were really swollen and that wasn't good. It was on my left side under my jaw it was about the size of a tennis ball. She put me on prednizone and antibiotics. I took everything in its entirety. I was no better, I went to infectious disease and they thought I may have had the mumps, all of my blood work was normal they tested me for Aids, sysphilis, and everything under the sun, everything was normal. All this time I had a low grade fever, so they thought it was some kind of infection. I was put on intrevenous antibodics, and nothing changed the fever was still there and so was the swelling, they sent me to a doctor that cleaned out my salavia glands, he took a biopsy of my lip, the salavia glands were sealed and he couldn't see why. The biopsy came back positive for sjogren's. Then I went to the Rheumy she ran more blood tests and said I did not have sjogren's or any anti-immune disease, by the time I went to her after my biopsy I had/have a place come up on my collarbone the size of a tennis ball, and every salavia gland in my face and neck is swollen, still. i feel like I look like an elephant woman, hahaha. Anyway now I have a lymph node in my groin and my spleen is enlarged, it is Saturday but I was sent to the hospital and got a CT of my abdomen and pelvis, I am awaiting the results. Two week ago on Thursday, I had a CT of my chest that was normal, then i had one of my super clavical(collar bone) Monday, and all of a sudden I have Atypical pheumonia on the upper part of both lungs. The doctor wanted another cT of my chest but insurance won't pay for it to see if it is all over or just in the top. In the midst of all of this I was sent to a hemitologist/oncologist. He is driving the bus so to speak to try and find out what is causing all of this. Sorry for all of he mispelling. The reason for the CT of my abdomen was to see the spleen, and the pelvis was for the new lymph node that is full to see if it can be biopsied, the neck apparently couldn't be biopsied because he said it was just fluid. I know this sounds horrible, but I am not worried about a bad diagnosis, I just want to be diagnosed. I am tired of being soo ill. The fever is horrible, and this spleen thing is miserable, but my next appointment is Aug. 1st, because i am waiting for bloodwork to come back, and he said he would diagnose me, so wish me luck.
I know I gave more information than you asked but I want everyone to have all of the information just in case there is someone else that this has happened to, so I don't feel all alone. Simply, swollen neck on the left under my jaw, trouble swallowing, and fever was the initial reason I went to the doctor.


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