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Old 07-22-2012, 05:09 AM   #16
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Re: I have a question?

I have a few suggestions that might help cover any overlooked items. Some of your symptoms could point to lupus, and I would think your Rheumy checked you for that, but I've learned not to assume the obvious. With Sjogren's there is often another autoimmune disease present. Lupus can cause fever, atypical pneumonia "lupus pneumonitis", which is inflammatory, not infectious, and sometimes large lymph node enlargement. It can also cause spleen enlargement. For the pneumonia, they should also run a cold agglutinin test or mycoplasma antibody test, as it is a common atypical pneumonia that has to be treated with specific antibiotics. These may have already been done, so I would just ask about it, and keep in mind that lupus can present with symptoms long before the test for it becomes positive.

 
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Old 07-22-2012, 04:48 PM   #17
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Re: I have a question?

I know this sounds absolutely crazy, but I hope it is Lupus and not Lymphoma(for hoping that it's anything); I am past the stage of hoping its nothing though, because we (doctor's and family) know it's something. I am just going crazy waiting for test results. The doctor's office called me today and I missed the call in regards to my CT I had yesterday morning, ironic isn't it; as worried as I am (it's Sunday). The good news is that they said to call them in the morning, I guess if it was really bad they would have directed me to the hospital. Anyway, I will let everyone know good or bad.
About 7 years ago, a doctor thought I had lupus, but I didn't present with a butterfly rash on my face, so it was ruled out, but who knows??? if I have learned anything through this process it is that nobody's body is the same. For example, on person could have this response to a syndrome/disease and someone elses could have another response.

 
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Old 07-23-2012, 08:50 AM   #18
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Re: I have a question?

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I know this sounds absolutely crazy, but I hope it is Lupus and not Lymphoma(for hoping that it's anything); I am past the stage of hoping its nothing though, because we (doctor's and family) know it's something. I am just going crazy waiting for test results. The doctor's office called me today and I missed the call in regards to my CT I had yesterday morning, ironic isn't it; as worried as I am (it's Sunday). The good news is that they said to call them in the morning, I guess if it was really bad they would have directed me to the hospital. Anyway, I will let everyone know good or bad.
About 7 years ago, a doctor thought I had lupus, but I didn't present with a butterfly rash on my face, so it was ruled out, but who knows??? if I have learned anything through this process it is that nobody's body is the same. For example, on person could have this response to a syndrome/disease and someone elses could have another response.
I agree; Sjogrens does seem to have many different additional symptoms that so differ from one person to the next. Also, I am seeing that it takes forever to get diagnosed; since it does present in some so slowly and over time. The "hallmark symptoms are dry eyes and dry mouth."
I hope you have a really great doctor and they take time listening and are understanding.
The Rheumotologist that I went to; on the first visti ordered blood work and his statement was "I think you may have secondary ss, but you don't look like you have ss." That was when I first started to not like him. Becuase what I should have said was, "really, do you rely on a look? becuase I don't look like Grave's Disease eather and I've lived with that for 12 years, a-- hole"
My second visit, was told that my blood work was only slight elevated which may mean nothing. Doc seemed to be wanting to dismiss me, so I thought I'd get a note for work and get out of there. But I seemed to **** him off when I asked for a note for work that stated; "must be allowed water at all time due to medical condition." He didn't understand why I need this; even after I told him that my work area was being threatened with write up for drinks in work area. Then when I mentioned fatigue he told me that was not a symptom and that it was too vague and accross the board. That was when I shut my mouth while thinking in my head this guys nuts and I won't be coming back. I left with the note and the two month return appointment knowing that I will go to someone else. I did ask for lip biopsy to be done at ENT dept, even though this doc said that that it could come back possitive and still not indicate ss, but be due to menopause. He never asked if there were any changes during the past month since I had seen him. But he did say that maybe my fatigue could be depression or anxiety; What a NUT!
Anyway, last night started a new symptom which is discouraging: stiff, slightly swollen and painful knee
It's no wonder the average diagnosis takes 6.5 years according to ss foundation.

 
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Old 08-07-2012, 10:51 AM   #19
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Re: I have a question?

Looks like they are going another direction with me. So, we will see. But on the subject of doctor's..why are they so...like that? No bedside manner whatsoever, how rude. I am so sorry that happened to you. Did you ever get the lip biopsy?

 
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Old 08-09-2012, 09:51 PM   #20
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Re: I have a question?

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Looks like they are going another direction with me. So, we will see. But on the subject of doctor's..why are they so...like that? No bedside manner whatsoever, how rude. I am so sorry that happened to you. Did you ever get the lip biopsy?
What direction are they going?
No lip biopsy. I decided when the Doctor told me that he had done the biopsy about a dozen times and that he would have to take a pretty good strip of the inside lip and I would have sutures and a healing time of a week to two weeks. He also asked me how it would change my treatment which it would not change. So, I said no; and decided not to.
The most frustrating is that there is no one single test that says for sure that we have SS or we do not.
I have dry mouth day and night, unrelieved for the past three months or so with no new medications or really nothing else to pin it on.
Anyway, hope you are doing better; stay positive

 
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Old 08-09-2012, 10:14 PM   #21
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Re: I have a question?

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??

Last edited by NBY; 08-09-2012 at 10:15 PM.

 
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Old 08-09-2012, 10:19 PM   #22
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Re: I have a question?

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.

 
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Old 08-12-2012, 10:19 PM   #23
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Re: I have a question?

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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.

 
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Old 08-12-2012, 11:23 PM   #24
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Re: I have a question?

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.

 
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Old 08-13-2012, 10:03 AM   #25
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Re: I have a question?

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?

 
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Old 08-13-2012, 10:25 AM   #26
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Re: I have a question?

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?

 
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Old 08-13-2012, 11:07 AM   #27
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Re: I have a question?

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.

 
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Old 08-29-2012, 08:13 PM   #28
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Re: I have a question?

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??

 
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Old 08-30-2012, 06:39 AM   #29
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Re: I have a question?

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.

 
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Old 08-30-2012, 01:01 PM   #30
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Re: I have a question?

I'm new and confused. I'm frightened of what is ahead. I' m BSN. I know to much! Does anyone have dizziness.

 
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