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Sjögren's Syndrome Message Board
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Old 08-12-2009, 11:36 AM   #1
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What to expect

Well just got back from the doctors and my lip biopsy came back positive for Sjorgren's Syndrome. I am already dealing with alot of pain with neuropathy and don't know what to expect from this. Any input would be welcome. Thank you.

 
Old 08-13-2009, 09:37 PM   #2
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Re: What to expect

Zoey, I don't have any answers for you. I am not diagnosed yet even though I have the sicca syndrome, lots of nerve pain, sweats, brain calcifications. Were you negative on blood work and that was why the lip biopsy? May I ask if the lip biopsy was painful?
I was offered the test and am considering it even though the rheumotolgist was telling me negative things about it.
Hopefully someone else will show up on the board and be able to answer you question. It has been quiet on here.

 
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Old 08-14-2009, 06:28 AM   #3
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Re: What to expect

Yes I was neg. on the blood work. I have been suffering from nerve pain, dry eyes, mouth, joint pain dizziness for 2 years. Doctors kept brushing it off as anxiety from the neuropathy. I didn't know how much the lip biopsy would hurt, no one told me. They said it would be like having dental work done. I should know by now not to believe the doctors. Lower lip was very sore, needed pain pills for 2 days. It has been a week and a half now and lip is still tender and numb. Dr. says feeling will come back but don't know if I believe him or not. I had the biopsy down by an ENT specialist that has done tons of these. I sure hope he knows what he is talking about. I have gone from someone who worked full time, walked 2 miles a day, all of the housework and shopping to someone who can barely make it through the grocery store all in two years. I honestly think mine was set off by a foot surgery. My eyes are so bad. I use Restasis and over the counter eye drops. The over the counter ones sometimes 3-4 times an hour. No relief. I even tried the eye plugs, no relief. Just wish I knew what to do.

 
Old 08-14-2009, 03:03 PM   #4
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Re: What to expect

Zoey, thanks for answering. I am sorry you are going through this. I was told by the dr the feeling may not come back in the lip then again, 7 years after having jaw surgery and getting hit with a car door blowing closed in a wind, I got the feeling back in my lower face. Go figure.
I know what you mean about the fatigue. I am weak at times too. I shake and tremble. THe sweats are horrible. I also have osteroporosis and I read sjogren's can contribute to that.
The eye drops have helped used with over the counter drops. I bought the mouth wash for dry mouth and that too has helped. I feel like I am dried up on the inside. I am always thirsty yet I feel dehydrated after I drink water.
I am going to wait for the lip biopsy until October as I first am going to have another brain scan to see if there are any changes. I also just had some testing by an endoencrinologist to see why I have osteroporosis. So far the only test back is my 24 hour urine and my calcium was 19. The norm is 50-250. That could be the reason for my cramping. I read somewhere not absorbing calcium can be part of an autoimmune disease, which takes me back to the sjogren's.
Oh and itching and dark patches on my skin. Do you have that? This whole situation is just lovely.....lol

 
Old 08-18-2009, 06:31 AM   #5
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Re: What to expect

Well my lip is feeling somewhat better now. Some of the numbness is going away and the pain isn't nearly as bad, so hopefully it will feel normal again. After two years of this I don't know what normal is anymore. Still haven't heard from the dr. yet, will give him until tommorow and then call. I would really like a good check up to see how this disease has been affecting my body. Been having alot of problems with dizziness the last few weeks, not sure what that is about. Where do you find the mouthwash for dry mouth at? That is something I would like to try. Hope your day is going better. Zoey

 
Old 08-18-2009, 07:52 PM   #6
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Re: What to expect

Hi Zoey glad your lip is feeling better. I guess I will have to go through the lip biopsy. THe endroencrinologist called and said my tests were normal and low urine calcium doesn't mean anything since I supposedly had a parathyroid test done at some point and it was normal. I guess her talk that there was probably an underlying cause of my osteroporosis didn't mean anything. I mentioned sjogren's can contribute to it but she said she had never heard of that. I am so discouraged I know there is something wrong.
The mouthwash is available everywhere. General mechandise stores and pharmacies It is called Biotene and there is a generic brand too. It was also recommended to chew sugarless gum

 
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