I have to feel a bit sorry for the Doctors here. I never thought I would say anything close to that but, there is a large, new and half empty Orthopedic hospital here and I'm sure this is going to cause a slowdown in the plans to make this a big ortho medical center. More interviews on the news with at least a halfway decent rebuttal by one of the doctors. Somehow a superimposed image of a PVC pipe beside a cadaver leg bone made a very bad impression. They also followed it up with another patient interview and the husband of the the patient saying he didn't expect it would affect the kids much but he might get something from her and he wouldn't stand for that. I have to admit my mouth is still hanging open for that one. I think I give the doc about a 75 to 80% credit on this one. It's obvious when my surgery was discussed, they knew about the 'problem'. They made sure vat grown was said several times but the reason for vat grown was not mentioned unless the pain blocked out my memory of it and I don't think it did. I'd give them a lot more credit if they had gone into the reason. On the other hand, I was hanging onto my crutches with white knuckles demanding to know what the delay was all about. That may have given them a bad impression of my reasoning abilities. Sandy

Hi Karen, this is going to be a bit long but please bear with me 'cause early Sjogren's is sneaky & I'd like to give you a reasonably comprehensive overlook. I'll start with Dry Eyes & Dry Mouth 'cause they are hallmarks of Sjogren's. Dry Mouth - Even as a teenager, I remember always having a drink with me although I don't exactly remember why. Never went to the store, never went on a date, etc. without that drink. It was a part of me. It wasn't as if I felt urgent need to hydrate myself. Just always this desire for frequent small sips. That continued for the next 30 years but didn't get any worse. About 6 years ago, it became uncomfortable enough I started mentioning it first to DH. "Gosh, my mouth feels like cotton balls!" Soon, it was bothering me enough I mentioned it to my primary care doctor. I was taking Flexeril at the time for a spinal injury & my PC doctor just shrugged the dry mouth off as a side affect. Now, it's so dry it bleeds. Mouth sores - yes. Dry lips - yes. Blisters - yes. The dry mouth has progressed to now being nearly impossible to deal with but that has taken decades to reach this point. Dry Eyes - My eyes have sorta "itched" for several decades. I never thought much about it. I've had eye infections over the years also but they were far enough apart I didn't think to mention it to a doctor when a new one turned up. Dry eyes have not been my primary focus with Sjogren's but they are now dry enough my opthomologist pretty much insisted I have the Eye Plugs inserted. They've helped, a lot. I still need drops. Eye lid infections - yes. Sores in the corners of my eyes - yes. Swallowing, Talking, Choking - My Sjogren's has progressed to where I can hardly talk anymore. I also have trouble chewing & swallowing. Many foods are impossible for me to eat. My diet has changed dramatically in the past 3 years. I also choke - especially on pills but also just trying to eat a meal. At night, my throat swells & sticks together blocking off my air. I wake up in a panic reaching for water. Dry Skin - Again, for as long as I can remember I've had dry skin. I'd go through gallons of lotion. Now, I use prescription stuff that really helps. Fatigue - Gosh, just thought I was "weird" & a bit unlike my friends. I never had a curfew as a kid. Mom knew I couldn't stay up late enough to need a curfew. She was right. Sometimes, I would fall asleep practicing with my chin on my accordion. Again though - nothing that seemed like a trip to the doctor was necessary. I will say though that the fatigue was complete. Sometimes, it felt like lifting my arms to brush my hair was impossible. Muscle/Joint Pain - Today "this" hurts, yesterday "that" hurt. Everyday, somewhere else hurt. The pain would last for a day or weeks & then disappear just as mysteriously as it had arrived. I thought it must be "normal" & I was just a wimp. I was diagnosed with fibromyalgia at some point & from then forward whenever something hurt doctors would just shake their head & use that diagnosis as explanation for my pain. Many times the pain was unbearable. I once overdosed on aspirin trying to get relief. That episode resulted in more blood work. Negative for everything. The pain though continued. In my mid-40s, I had an extensive & unusual spinal surgery to correct a rare injury. The surgery almost did me in. After that surgery, doctors blamed the surgery every time I burped. I should note that I've had 13 major surgeries for "unusual" stuff. Fevers - I have a history of spontaneously running a fever. Fine one minute. Poof, next minute...I've got a fever of 101+ degrees. An hour later, I'm fine. Nightsweats - I've had then for decades. Always associated them with some cancers (I'm also a multiple cancer survivor) so I was afraid to mention them to my doctors. But, my fear didn't make them go away. Still have them. Still haven't told my doctors. Heart Palpitations - Ended up in ER. Diagnosed with "Anxiety Attacks". Nope. Sjogren's. Sensitive to Temperature Changes - I'm either cold or hot. There's only about a 5-8 degree range I'm really comfortable. It's not just chilly or a bit warm either. I'm either shaking from cold or in ER from heat stroke. So, we keep our house even temperature year around. Sometimes, cost isn't everything. Dental - Gosh, where to begin? Let's just say I fought a good fight but just a couple years ago I said, "ENOUGH! I can't tolerate this anymore. Pull them out, every single one - NOW! I'm not leaving this office until they are gone." Even implants would not stay in my jaws. I've pulled two that were erupting from my jaw by hand in the middle of the night to stop the pain. Now, I've got dentures (should have done that years ago!) but my mouth is so dry my tongue sticks like glue to the dentures & bleeds when I try to move it. Ugh. Neuro Pain - This is now a serious problem. I have no feeling at all in my legs/feet. Seriously, I can't feel the floor or anything else. Sharp pins/needles type pain virtually constantly. Stress - I had a garden accident July '09 & re-injured my spine around the surgical area (right between the shoulder blades). My back surgery had been so "unusual" a hotdog surgeon was brought in from Arizona. He published a "White Paper" on me that lives for eternity in medical journals along with the video they took of the the entire surgery. Anyway, the re-injury hurt so bad I had a stroke. Yep, I met the definition of "stressed" there for awhile. As I started to settle down from this little incident I noticed that my mouth was drier, my eyes were drier, my muscles/joint pain was worse, the fevers were more frequent, etc., etc., etc. I could go on with other symptoms but I think that's enough for you to get an idea of Sjogren's. Eventually, I found a doctor that treated me as a whole patient & didn't just look at the reason I'd written down for that particular appointment. It led to my diagnosis for both Lupus & Sjogren's. A word about the bloodwork is in order here, I think. I'd had these tests multiple times before - always negative. Many doctors said, "Tricia, I "think" you've got Lupus but your tests don't bear confirmation of that diagnosis." One even prescribed Placquenil & my fevers virtually disappeared. Unfortunately, that doctor left the practice & his replacement didn't believe my tests justified the risks of Placquenil. The fevers returned within a few short months. Anyway, my current primary care doctor redid the bloodwork yet again. This time, I was positive for both Lupus & Sjogren's. It tooks decades for those tests to turn positive. My last SS-A test results were 2.78. Positive. My SS-B test results were 3.25. Positive. Also, Sjogren's patients often show Vitamin D deficiency. I'm almost always testing deficient & take 50,000 mgs once/week for 4-8 weeks then off for a bit until we test again then back on for another 4-8 weeks. You will also, most likely, have an abnormally high SED rate. It will vary if you're having a Sjogren's "flare". BTW, that's the best time to make the doctor's appointment - when you feel awful, like you can't drag yourself anywhere. I'd recommend finding a doctor that will treat ALL of your symptoms. Treat you as a whole person with this variety of things happening that may seem unrelated, to you. Tell your doctor every little thing. Sjogren's is SYSTEMIC. It affects your whole body. Yes, there are specific markers like the dry eyes/mouth thing but many Sjogren's symptoms mimic other diseases. Diagnosis is often overlooked both due to doctor indifference & lack of persistence in patients. There is no defined Sjogren's protocol for treatment. It's a "treat it as it appears" approach for most doctors. (bummer) But, a protocol is being developed now & the goal is that it will be available to doctors in 5 years (I know, sounds like an eternity but, like breast cancer, you have to start somewhere). I've recently been excepted at John Hopkins. They have a specific Sjogren's department & a doctor heading that clinic who has chosen Sjogren's as his life work. My first appointment is October 18. I've received volumes of "stuff" from John Hopkins regarding my appointment that will be two full days. I'm got appointments for about a dozen specialized tests. I've got advanced Sjogren's & frankly feel just about defeated. After 50+ years, it's taken a toll. But, I accomplished a lot with my life - Sjogren's be damned. I don't know if my disease process will help you identify what you're experiencing, or not. But, don't ignore your symptoms. If they sound like they could be Sjogren's - be persistent. Just know that it will be a journey to diagnosis. Not a short sprint. Since getting me as a patient my PC doctor has been able to make a diagnosis on another women for Sjogren's. She's thanked me saying she would have overlooked the clues had it not been for having me as a patient. We're learned together about Sjogren's. So, doctors are becoming more aware & Venus Williams' diagnosis, hopefully, will also draw more attention to this autoimmune disease. mboston, don't give up. If your gut feeling is correct (and, IMO, our bodies usually tell us the truth) then you'll need to stay in your doctor's face until you get a blood test that pops positive. That can be illusive. If you're having a flare...make an appointment. Tell the receptionist that next week is not OK...you need an appointment tomorrow! /tricia

I'm with Oakley - I don't think its that rare either. I think its something that isn't widely talked about because one might think its contagious. I've never been one to share drinks or lip gloss or whatever, but I do make sure that if my mouth is broken out, I keep my drinks away where my Grandson can't reach it. His parents share drinks with him so he just assumes others will. So many things pop up when you go through menopause, like the Frozen Shoulders I mentioned before. I had a total hysterectomy when I was 36 but stayed on HRT until 10 years ago - a couple years later, these strange things started happening. I know this sounds - weird - but I had to have a tooth pulled a couple years ago and this oral surgeon mentioned that he had read an article about something similiar and it was thought that the constant irritation could be brought about when a person has alot of metal in the mouth from fillings and crowns(gold). There could be a small electrical current going on which would keep the lining of the mouth sensitive, especially if the body chemistry is off - I think he said low potassium, magnesium, and perhaps zinc. I have several gold crowns, and a gold bridge, plus old fillings that contained some metal. I know at one time when I was having issues, my potassium level was low and the doctor started me on a supplement. I still take it daily. Let us know how the allergy tests go - no fun there.

I had food allergy testing done because I started having sores in my mouth. Tests came back that I am allergic to a number of things - 3+ on most - shellfish, oats, almonds, strawberries, oranges, nutmeg, cauilflower, mushrooms and of all things - celery! The allergy doctor says most allergies cause stomach problems headaches etc, not rashes or sores unless it is a nut allergy. Anyway - I know that I had been eating lots of oatmeal when the weather was cold and was in hopes that it would lower my cholestrol. Ha - turns out the stomach issues I was having was probably due to the oats! I avoid most of the things now - will eat a little crab once in a while and if the celery is in something else I eat it. I do avoid the almonds and the oats which seemed to be the worst. I think I am also allergic to something that is found in the seasoning I use on my Standing rib Roast. It is called Everglade Seasoning and makes the best roast. Anyway, I had a severe reaction - swelling eyes twice after eating meat I had cooked with it. First time I ended up in the hospital for three days - made the mistake of saying that it started with a shortness of breath. Several tests later I learned that I have a slight narrowing in a small place in one artery but no biggie. They were not worried about the eye swelling - but it took a week to go away even with heavy doses of Benadryl, Claratin and Prednisone. Happened a second time to a much lesser degree - I got out the Benadryl and allergy pills immediately and got it under control. I still carry my Epipen and Bendaryl with me wherever I go, though. Turns out the mouth sores are probably from a Galvanic Reaction to the amount of metal I have in my mouth from fillings and crowns. Took several months to run its coarse but will crop up from time to time. Keeping myself hydrated helps as does a good Vitamin B. Some thought it was called Geographical Mouth, which the same things are suggested for it. One interesting fact is that the mouth issue, eye swelling issue and the heart issue all occured about the same time. Bloodwork during this time also showed my potassium level was low. Since then I take a Potassium tablet every day.