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Sjögren's Syndrome Message Board
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Old 07-22-2008, 05:04 PM   #1
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missingyou HB Usermissingyou HB User
Does this sound like SS

A little backround info..

for the past 10 years I've had dry mouth , nose with redness around the creases, I get whiteheads in that area as well. I'm always drinking water etc.. I have peeling lips because a bunch of meds I was on, quite dry around that area as well, at the same time I always had dryness around my mouth as kid nothing too significant just a bit more then average. I developed a bit of dermatitis around my mouth a 2-3 months after getting some dental fillings(late january)

In mid may on vacation I ended up getting this intense burning feeling around my Lips keep in mind I had been using Elidel around the sides for a few months(an immunosuppresant). I noticed a few bumps on the inside of my lower a bunch of smaller ones and 2 bigger ones, the dentist says their salivary glands. The irritation on the outside of my skin gets realived by sucking on ice cubes, as well as putting gauze inside my lower lip, creating a type of barrier. This makes me think of a dental allergy but I don't really know?

The tingling and burning feeling was 90% on the bottom right half of mouth only 1 week ago. After getting 2 new fillings put in on my left side last thursday I'm experiencing most of my irritation on my left side, mostly bottom again. My dermatitis was much better looking on my left side last wednesday/thursday morning. ATM the right side looks alot better, maybe it's just a coincidence, I doubt it. This sensations aren't very pleasant to say the least, I find doing just about anything enjoyable impossible. Is this the type of stuff you people experience on a daily basis?


When I go in the steam shower the irritation goes away, but returns shortly after, I apply very good senstive skin, non irritating creams on my lips/around my mouth.

I was/am worried about my dental filling being an allergy causing the irritation, I mentioined my concern but they didn't think it was to valid and I ended up getting 2 more fillings put in my left side. I ended going back there today and getting him to have a second look he spent a good amount of time with me but again he didn't think it was a dental allergy but at the same time he didn't rule it out.

Keep in mind back in 05 I had my top 2 front teeth filled with alot of dental paste and I ended up having a really bad irritation that burned extremely bad after going on vacation. I told them I was allergic even though I wasn't 100% sure and they removed it and they irritation disappeared.

I'm unsure what's causing the problem but it's extremely annoying, I might just call in tommorow and ask them to remove it I don't care if it's only a small chance I get better but I think it's a fairly respectable chance actually.

Does this sound at all like Sjogren's syndrome or do you think my dental problems are a much more likely culprit? Swollen salivary glands are really related to sjogren's syndrome although I've read they can be related to trauma allergy's and cancer as well. I should also add I've had swollen lymph nodes muscle and joint pain , on top of my skin irritaiton. Although there are other possibilitys for that maybe a viral infection.

Any input, advice or comments are greatly appreciated, I'm leaning towards the allergy I just want to be sure. ATM I'm planning on calling tommorow and telling them I want it out no matter what.

 
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Old 07-29-2008, 09:09 PM   #2
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Re: Does this sound like SS

I don't feel qualified to answer your question, but it sounds like more of an allergy to me than SjS.

I am a male recently Dx'ed with SjS and the way it presented for me was a extremely dry mouth resulting in a loss of three teeth in 9 months. Bone loss and gums receeding. No pain, pre se, just dry, dry, dry.

I was seronegative on the blood tests, but an X-ray of my hands showed RA.

The rheumy said SjS was almost a sure thing, but without a biopsy, he wouldn't publish the fact, however he is treating me for it.

I wouldn't rule out SjS in your case, but it doesn't sound quite right to me. A parotid gland biopsy is generally the clincher, but sometimes not.

How are your eyes? Dry?

How about your voice and swallowing food (dry bread, crackers) without water?

Are you greatly fatigued?

SjS affects people quite differently. Keep and open mind and seek a doctor willing to work with you.

Best of luck, my friend.

Last edited by nussy22; 07-29-2008 at 09:11 PM.

 
Old 07-31-2008, 02:35 AM   #3
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Re: Does this sound like SS

Quote:
Originally Posted by nussy22 View Post
I don't feel qualified to answer your question, but it sounds like more of an allergy to me than SjS.

I am a male recently Dx'ed with SjS and the way it presented for me was a extremely dry mouth resulting in a loss of three teeth in 9 months. Bone loss and gums receeding. No pain, pre se, just dry, dry, dry.

I was seronegative on the blood tests, but an X-ray of my hands showed RA.

The rheumy said SjS was almost a sure thing, but without a biopsy, he wouldn't publish the fact, however he is treating me for it.

I wouldn't rule out SjS in your case, but it doesn't sound quite right to me. A parotid gland biopsy is generally the clincher, but sometimes not.

How are your eyes? Dry?

How about your voice and swallowing food (dry bread, crackers) without water?

Are you greatly fatigued?

SjS affects people quite differently. Keep and open mind and seek a doctor willing to work with you.

Best of luck, my friend.

A coarse voice do you mean? I haven't noticed any changes off the top off my head but I could ask others.

I wouldn't say my eyes are dry or anything, not to the point where I use eyedrops. when I used to smoke marijuana my eyes would get extremley bloodshot moreso then the average person. To the point where I had to put visine in before because I couldn't do it aftewards.

I don't really eat bread or crackers but for as long as I can remember whenever eating anything dry I gotta chew then drink some water then swallow. I'm into bodybuilding/weightlifting havent althogh done much in weeks. I tend to eat alot and I gag quite often and having to swallow with water, and I wouldn't gain any weight when doing this, I guess with my weights/cadrio I had a fast metabolism. Some times I would be forcing the food down to get enough calories others I wouldn't have been full

Lately I've been much more fatigued then usual but I think I may have contracted some type of virus from this girl,I've been having alot of weird symptoms that all fall under the Virus family... Really sore muscles, joint pain, fatigue, acne like rash, a bit of soreathroat, headache, maliaise, extreme fatigue, mouth ulcers(different then the swollen salivary glands) These symptoms came after my skin irritation and the swollen salivary glands.

Benadryl seems to give me a bit of temporary less irritation( burning less or goes away and the itching lessens or stops)

.This makes me lean more towards the Allergy cause/effect. I stopped my antibiotics around the time that I got my most recent 2 fillings.

My aunt also had MS which I'm not sure has anything to do with other AutoImmune disorders (not sure if theres a genetic Link)

Thanks for the Reply.

Would benadryl give any relief of my symptoms if there were soley related to SJS, or could there be an overlap of issues here?

I mentioned SJS to this temporary doc he seemed to dismiss it quickly, and he didn't think what I had was allergy related. I also got some Dental material tested with VEGA testing and I showed reactivity to almost all of the Composites, Especially Heliomolar the kind that leaks flouride out, which has been shown to cause perioral dermatitis

 
Old 07-31-2008, 10:45 PM   #4
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Re: Does this sound like SS

I should also add benadryl half of the time benadryl doesn't help. On the inside of my mouth the reciperacol of where my skin is irritated there are alot of raised white bumps most likely swollen salivary glands.Below the corners of my mouth in that area.

The irritation comes and goes in severity eating seems to eliviate things, for a few seconds. I do gag alot due to lack of saliva, my mouth is always dry despite drinking water almost constantly

A family member metioned my eyes looked red.

I think it's possible that the dental work irritated my salivary glands mouth which caused the irritation. I'm so confused if this is SJS, an allergy, or something even worse like HIV.I hope it's an allergy, but I'm sketical due to some of the things I've mentioned. I've got dry skin as well and it's been extra itchy lately

 
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