They are still running tests on me but they think NHL, another Dr appt monday for an official diagnosis. I have no idea what I have at this point.
Food for thought..At first I was told the lip biopsy was for sure for SS, but when I went to the rheumy, she said not so... It was the blood test tether for ss accompanied with the biopsy that was the for sure answer. My lip biopsy was positive for sure, and the blood tether was negative so according to her that is not was is wrong with me. I also have lymph node issues that came up after the lip biopsy, that is why I went to hemotology/oncology.
I am on this forum because my salivary gland was swollen, and I had a fever, that was 3 months ago. I had my salivary glands cleaned and flushed accompanied with a lip biopsy and the biopsy came back positive for SS. I had never even heard of it, I went to the rheumy and you know the rest.
I hope you find a solution, it really stinks not knowing for sure. I don't know what difference it would make in your treatment, but a for sure diagnosis is important, isn't it??
For the record they did take a strip of skin from my lip, and I did have disolvable (sorry about the spelling) stitches, but it healed pretty quickly. my lip was numb for a bit but it didn't hurt, and it has healed very well.
For the record they did take a strip of skin from my lip, and I did have disolvable (sorry about the spelling) stitches, but it healed pretty quickly. my lip was numb for a bit but it didn't hurt, and it has healed very well.
Do you have chronic dry eyes and mouth?
I hope you have trust in your MD and if not; find a new one.
Get all your questions answered. Don't be a guinie pig and ask about side affects of everything!
Stay positive and find goods things about each day.
The Following User Says Thank You to Beerosie For This Useful Post: NBY (08-12-2012)
I trust the Hemotologist/oncologist I go to, but if it is not what he thinks, and he can't figure it out, I don't know what i will do. I already been to rheumy, ent's, and infectious disease. I do not have chronic dry mouth and dry eyes, right after he cleaned out my salavia glands, I was dry for a bit, but they said that was normal because of the additional swelling. That was not one of my original symptoms, and it is not the case now. I have/had a swollen salavia glands (all of them, now. It started with one) with fever, and when the lip biopsy was done is when they said sjogren's, then the rheumy said it wasn't. I don't understand it, I have had a fever of 99.7-100.8 for 3 months straight, with swollen lymph nodes popping up. My collar bone lymph node was swollen 2 weeks after my lip biopsy(I had the cleaning and the biopsy at the same time), the swollen lymph node was the only reason I went back to the doctor;otherwise i still wouldn't have been to a rheumy yet, they made that appointment for october, now I also have a swollen lymph node in my groin. the one on top of my collar bone is still there its been there since, June. By the time I made this post I had already been sick for two months. They thought they had nailed down a diagnosis with sjogren's when they did the lip biopsy, but they were wrong. The only thing we know for sure is what it is not, which is frustrating. I don't have HIV or any kind of sexual transmitted disease. I don't have the mumps, or any type of infection, and apparently I don't have an anti - immune. I just hope and pray they finially say what it is, and not what it is not.
Well, stay in touch - I would like to know what it does finally come down to.
I work with a gal that is about 50, she has a constant swollen lymph node at left side collar bone and an on and off swollen tender node at right arm pit, has a flu like feeling; they have never figured hers out and it's been many months. I think the docs didn't figure it out so they say it must be a virus. So, as we search for answers, let's stay in touch. You are doing reading and researching on your own right?
Well, stay in touch - I would like to know what it does finally comes down to.
I work with a gal that is about 50, she has a constant swollen lymph node at left side collar bone and an on and off swollen tender node at right arm pit, has a flu like feeling; they have never figured hers out and it's been many months. I think the docs didn't figure it out so they say it must be a virus. So, as we search for answers, let's stay in touch. You are doing reading and researching on your own right?
I was told not to do too much research online, and i have been trying not to. I jumped on this message board because I knew nothing about sjogren's when I was first misdiagnosed with it. I am really sorry about your coworker as I know how it feels to be sick all of the time, it feels like you just need a break from the fever and it would be okay, or at least that is how i feel. Have to go to my appointment.
Sorry it took me so long. I got really stressed out waiting on results, but I do have some. I am very glad to announce that I do not have lymphoma thank you for your prayers, Thank the Lord. I was told today that the Rheumy I went to did not tell me the truth, and that it was not true that bloodwork trumped biopsy. Biopsy always trumps. ok, but I don't have really dry mouth or really dry eyes. So, he thinks they found it early, so early I am not suffering with the symptoms fully, don't get me wrong, my mouth does get dry but not to the extent I hear some of you describe, at least not yet. He said that he was sure I have Connective Tissue Disease, and that sjogren's was one of the auto immunes that I have for sure. More tests to see what combination, so they can make me a cocktail to fit my problem. My symptoms are FEver every day (99.7-100.8) for 4-5 months, lymphadanopathy, fluid collection in my neck that goes down but when it goes down(it doesn't go all the way down) it goes into my lungs, I have fluid on my ear now but no infection just fluid sitting there all in my neck, he said that was weird, lymph node in my groin, cysts of the back of my legs and 2 cysts showed up on my mammo. No maligancies (woo), short of breath, and rashes, fatigue, and joint pain with inflammation.
Has anyone here have Sjogren's, that has been diagnosed with Sjogren's as one of their auto immune disorders? And what can I expect??
I am so glad to hear that you do not have lymphoma! I was diagnosed with sicca after I was diagnosed with limited systemic scleroderma. I don't know why it's usually called sicca in stead of Sjogren's with scleroderma but my rheumatologist uses the terms interchangeably. People with scleroderma don't usually go through the biopsy and blood tests if symptoms of Sjogren's develop after the systemic sclero diagnosis. We are just treated as if we came up positive through labs and biopsy. We get the same symptoms as stand alone Sjogren's such as dry everything, neuropathy, fatigue, and such, just in addition to the sclero.
