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texasmary 06-23-2012 10:24 AM

Other symptoms -- are they related to SS?
I tacked this onto another post and didn't hear any responses... so I'll try again in a new thread.

I am curious to know if any of the folks on this board are dealing with any of the following symptoms and if they believe that they are related to Sjogrens. My docs tell me that it is often hard to tell the difference between normal aging and Sjogrens. I'm 66 BTW.
1) loss of hearing and ringing in ears
2) burning tongue syndrome (like hot sauce)
3) puffy eyes (came on suddenly) and one droopy eyelid (old symptom)
4) deep grooves in fingernails that appeared rather suddenly
5) hives of undetermined origin (come and go)
6) very cold hands, but not bluish
7) frequent hot flashes that have reappeared since menopause several years ago

I know that every Sjogrens patient is different, but I can't help but wonder if some of these go along with the diagnosis. Thanks all.

NBY 06-23-2012 07:56 PM

Re: Other symptoms -- are they related to SS?
I am new to sjogren's syndrome, but I am having two of your symptoms. Besides the normal dry mouth, I noticed my fingernails have grooves in them, and it happened suddenly; and my eyes are swollen and one is droopy. I am also having swelling in my salavia glands; which is normal for sjogren's, but I have tennis ball size swelling by my collar bone, and at the base of my skull in the back of my neck. I went to the doctor on the 21st, but my doctor is in Europe and I had to see a resident and she said she didn't know what the collar bone swelling or the back of the neck swelling was all about. Fever stays with me too. i am waiting to get my appointment with a Rheumy to see how far advanced and try to figure out what else is going on. I really hope you feel better, keep your head up and keep pushing forward. I know it is hard sometimes but rest when you need to and when you feel good do what you can. Listen to your body, if it hurts don't do it.

texasmary 06-23-2012 09:16 PM

Re: Other symptoms -- are they related to SS?
Thanks for the answer. Hope you get answers quickly to the swelling issues. About the eye issues... I began having one droopy eyelid after a bout with "pinkeye" about 7 years ago, but it got better for a while. Recently, it is almost closed when I am very tired. The swollen eyelid (mostly on the other eye) started a couple of days after my visit with the salivary doctor and she had been prodding around on my salivary glands while doing various tests. I thought my allergies were acting up, so I took Benadryl a few days. But it has been five weeks now and my eye still looks puffy. I was supposed to do the lip biopsy this week, but it had to be postponed because of some paperwork snafu. I am anxious to get those results back so that I can have some degree of certainty about the diagnosis of Sjogrens.

NBY 06-23-2012 09:33 PM

Re: Other symptoms -- are they related to SS?
I literally just got my results 3-4 weeks ago and I didn't even know what sjogren's was. It's kinda coinsidental (spelling) that I thought my throat, neck, and eyes swelling was from allergies, but no such luck. Thinking back now, my eyes have been swollen for a while. When I was diagnosed I started looking back at my pictures and realized that my salavia gland on my left had been swelling over the past like year or so and I didn't even notice it until I woke up one morning and couldn't swallow, and thought I was having an allergy attack of some sort. Now I am swelling all over the place. Thank you so much for answering, and I really hope you get diagnosed soon. It really stinks not knowing what is wrong, but knowing that something is definitely wrong. Get that biopsy as soon as you can. They can tell a lot from that biopsy. I hope you feel better soon.

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