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Sjögren's Syndrome Message Board
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Old 06-28-2012, 07:41 PM   #1
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Unhappy Scared and Frustrated

Well, as I said before I was diagnosed with Sjogren's Syndrome. I went to the doctor on the 21st and they were just checking my surgery sight from my lip biopsy, at a cancer center. I was absolutely terrified, but they did nothing but waste my time as my doctor was in Europe. Since my surgery I have a growth right above my clavical (collar bone) still running fever and having night sweats. They made me an appointment with a rheumy in october, yes october it is june still. So, I took matters into my own hands and went to a doctor on my own. They are sending me for a CT scan of my lungs, and doing a ultrasound guided biopsy of the growth on my clavical. She told me that the growth on my clavical was a lymph node and when it swells there it could be caused by something in the lungs, I get really short of breath when i walk or exsert myself now. I have gotten so sick since he did that biopsy of my salavia gland that come back positive for sjogren's. The growth on my clavical is so big you can see it protruding, at least the size of a tennis ball now, started at the size of a ping pong ball and has been there for 14 days; and still growing.. Has anyone else experienced anything like this, please respond and give me some peace of mind!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 
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Old 07-07-2012, 08:06 PM   #2
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Re: Scared and Frustrated

Couldn't do the ultra sound guided biopsy when I went in the radiologist found a pea sized nodule on my thyroid in my neck. Great, so I go back for a CT guided biopsy. Good news my CT of my chest was normal whoop whoop. Getting there but it is a very slow process, and I know the doctor's don't mean to but they can scare the crap out of you.

 
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Old 07-07-2012, 08:22 PM   #3
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Re: Scared and Frustrated

I'm glad your chest CT was ok, and the thyroid nodule and lymph node could be related. Are they on the same side? The fever and night sweats may be related to the lymph node also, so it is important to get the node and nodule checked out, then you should have an answer. I know it may seem the lip biopsy caused this because of the timing, but I doubt it is related. Have you have blood tests done, like a blood count and thyroid levels? Those would be helpful if not done yet. Good luck and I hope it gets scheduled soon so you can get relieved of the anxiety of not knowing.

 
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Old 07-07-2012, 09:01 PM   #4
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Re: Scared and Frustrated

It is on the opposite side. I went to the Rheumy for the first time last week, and she said that she needed to see what blood tests had been run already; so we requested my records and she did say that she wanted to run several blood tests next week, but that the lump needed to be delt with first. She said that she suspects I have had this for 10-15 years untreated, so I urge anyone who thinks they might have this go get tested and tested and tested. She thinks it is doing damage to my organs..like my liver. Please if anyone hears me don't ignore your body, it is trying to tell you that something is wrong. If I would have been treated when I first started experiencing symptoms it may have been able to have been controlled better. Thank you for responding to me ladybud, it is nice to actually hear from someone on this forum, I feel so alone with this, bless you.

 
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