Does this sound like Sjögren’s Syndrome? Please help.

You poor love - you've really drawn the short straw healthwise.

All that dryness you're describing certainly sounds typical of Sjogren's. However, it does sound to me as if you might also be suffering from one or more of the other AI conditions in the connective tissue group - SLE (systemic lupus erythematosus) and/or scleroderma, for example. They can overlap in some cases, particularly in younger sufferers.

This problem of bloodwork showing up normal is a perennial one with most AI diseases. In my own case, I've found over the 23 years I've had SS that inflammation markers are more likely to show up when I'm in remission, while being absent while I'm in flare-ups! I know I'm not the only person on these boards to have a similar experience.

All I can say about relieving the symptoms is that you should use the toothpaste and mouthwash prescribed by your dentist. Did your ophthalmologist prescribe drops, or suggest an OTC brand? If not, and you're buying your own, avoid any that contain preservatives, as these make the problem worse. For daytime use, OTC drops containing sodium hyaluronate are the best, although they're unfortunately also the most expensive. You need to be using some kind of gel or cream in your eyes at night too. Some people get on with well carbomer gel, though I personally don't. My ophthalmologist recently suggested an eye cream containing white paraffin, vaseline and lanolin, which I seem to tolerate better. There are also vaginal creams and gels you can use, but I don't have any personal experience with these, as I was already in my 50s and no longer in a relationship when my SS began. However, I'm sure others will be able to advise you on this one.

Also, did the ophthalmologist suggest any further treatment? Some people have had success with having plugs put into the ducts that drain the eyes. That way, you can retain any tiny amounts of tears you do produce.

I'm glad that you've at least managed to find a rheumatologist that specialises in SS. I gather they're pretty rare. Do as much research as you can on Sjogren's, SLE, scleroderma and fibromyalgia before you get there, to make sure you bring out all your symptoms and ask the right questions. Sadly, most people with AI conditions spend years being fobbed off by various doctors, including so-called specialists, before they finally get the help they need.

I wish you all the very best in your search for the best treatment.

You certainly are carrying a lot. And your health problems seem to mimic my own. My experience with getting diagnosed with Sjogren's is this...I was seeing a rheumatologist for another autoimmune disorder I have and she did a blood test to check for SS and it was negative. I did not go any further at that point and actually since there's no cure for SS the only thing that can be done is to manage your symptoms. Eventually I wanted to get a lip biopsy done to try to confirm a Sjogren's syndrome diagnosis. And wouldn't you know it, it came back inconclusive. No one that I've told that to has ever heard of that happening. But I don't put a lot of faith in that lab that looked at the tissue the oral surgeon sent to them. Then a few months later another kind of blood test was wrong and I was positive. Fortunately during this time my doctor was treating my symptoms and I was doing everything I could do anyway. I am taking Restasis for my eyes, I've also had plugs put in my tear ducts. My rheumatologist has given me a prescription to help my mouth create saliva. I recently started treating the inside of my nose which is very dry. I use something called Ayr gel that you put inside each nostril. One thing you can do to help your eyes is to take omega 3 at least 1100 mg. That's what my eye doctor had me on for a very long time before that stopped working well enough. you mentioned that you had AI running through your family but you have asthma and that is an AI disease. So you already have at least one. And I always say this about autoimmune disorders, they're like Lay's potato chips you can't have just one. Hahaha!

My goodness, you're certainly having a difficult time and I sincerely hope someone will be able to help you. I've had SS for 27 years now and my only symptoms are dry eyes and very little saliva. The former is helped with eye drops but the latter is more difficult as I really have trouble swallowing. Most of my food is bland which I can handle but I've also spent hundreds on my teeth which is never ending. Saliva protects teeth but I don't have it despite my saliva glands being in good condition. I'd love to hear from someone to learn how they handle a dry mouth. I suck mints continuously. Good Luck........