Now what?

My doctor did 2 blood tests. ANA and SSA, I think. She called yesterday and said they came back negative. Didn't show any markers. Then she hung up. So, I'm wondering, now what? I still have no tears and no saliva.

Sounds upsetting when your symptoms are bothersome. A lot of people have negative markers but still have Sjogren’s. Journal your symptoms so you have a record you can show your md. Some people have lip biopsies. I didn’t have to go that route since I had positive labs so I can’t advise you on that. Some doctors will treat based on symptoms.
You may want to think about getting a second opinion.
Let us know how you make out.

With many autoimmune diseases, including Sjogrens, patients can be “seronegative”. This means that there is an absence of the known genetic markers and inflammatory markers in the blood. In Sjogrens, about 60-40% are seronegative, so it’s not all that uncommon. Doctors KNOW this, so it’s really frustrating to hear that this is still happening to patients! At this time, you need to make a decision as to whether or not you want to continue with this doc or get a second opinion. Keep pushing for treatment, and for someone to hear you. Diagnosis can still be made without those labs being positive, and instead based on a persons symptoms.

I’m sorry that you were dismissed. You certainly don’t deserve that.

Hi,

How frustrating for you! It's so hard to be so miserable yet have no diagnosis. I'm sure you know that many other things can cause dryness; however the fact that your ANA and SSA are negative does not necessarily mean that you do not have Sjogren's syndrome. Criteria for diagnosis according to the American College of Rheumatologists require two of three things: 1. positive SSA/SSB, 2. measurably dry eyes, 3. positive lip biopsy.

So the fact that you do not now have measurable amounts of autoimmune autoantibodies is only one of the three criteria. Since you do have dryness symptoms, it is possible that a lip biopsy will be positive thus fulfilling two of the three requirements for an official diagnosis. You may want to ask your doctor if a lip biopsy could be done.

Many rheumatologists will accept seronegative patients to their caseload based solely on their physical findings and treat them accordingly. It's estimated that up to 1/4 of all Sjogren's patients do not have SSA/SSB autoantibodies.

Keep looking for answers! Keep us posted! - Julia

You should be treated based on symptoms at a minimum. If this doctor is so dismissive though, you may want to find a doctor who will look at you and your concerns, and not just lab results. I’m seronegative yet am diagnosed with psoriatic arthritis and sjjogren’s.

Ask for a lip biopsy, it;s really quick. You will get a bit of discomfort for a few days, but the most annoying thing is the sutures and waiting for them to fall out.

I have been in that same situation in the past, so I know how upset and frustrated you must be. I had already been diagnosed with Sjogrens by john’s Hopkins medical center, but the military base where we were stationed did not believe it because they didn’t diagnose it. I now know your ANA doesn’t always have to be positive to still have this disease. I’ve realized that when I feel great there are times when my ANA is negative and when I feel sick it is positive. I’m not sure if that’s everyone’s experience, it’s just mine. I was diagnosed close to fifteen years ago and many things have changed since then, but if there is ever anything I can do to help you, please email me and I’ll do what I can to help. My personal email address is ■■■■■■■■■■■■■■■■■■■■■■■■.

I had the same negative SS blood work so they did a lip biopsy and that came back suggestive of SS. Drs can be so frustrating, I'm having a hard time finding a rheumy dr. near my home that can answer my questions. the wait for one can be hard when you are feeling bad. Keep pressing, you are not alone. DRYGIRL


Can a person walk into John Hopkins med center without an appointment?


Fmrcyote said:

I have been in that same situation in the past, so I know how upset and frustrated you must be. I had already been diagnosed with Sjogrens by john's Hopkins medical center, but the military base where we were stationed did not believe it because they didn't diagnose it. I now know your ANA doesn't always have to be positive to still have this disease. I've realized that when I feel great there are times when my ANA is negative and when I feel sick it is positive. I'm not sure if that's everyone's experience, it's just mine. I was diagnosed close to fifteen years ago and many things have changed since then, but if there is ever anything I can do to help you, please email me and I'll do what I can to help. My personal email address is ■■■■■■■■■■■■■■■■■■■■■■■■.

The Johns Hopkins Sjogren's Syndrome Center website can be found here. You must have a referral from a physician to schedule an appointment. Check out the site, it has some useful information especially specifics of what chart information you need to bring when you are able to see one of their physicians. The page to request an appointment seems to assume that you have had a lip biopsy done and bring the slides from the biopsy with you.

Best, Julia

You can find links and information about other Sjogren's Syndrome clinics throughout the US on my blogpost "Show Me The List" found here.

Thanks so much

JuliaSchulia said:

You can find links and information about other Sjogren's Syndrome clinics throughout the US on my blogpost "Show Me The List" found here.

Last year I saw an ENT because of hard swollen salivary glands and having a hard time swallowing. He suspected Sjogren’s and did the blood work for it. It came back negative. He dismissed me and told me it was just my jowls sagging. I basically told him he was a whack (without calling him names) and I wanted a second opinion since he was unwilling to look into it further. I was referred to U of M. That ENT took one look at me and said he was almost positive it was Sjogren’s and referred me to a rheumatologist. He had 15 vials of blood work and urinalisist done. It all came back negative but he did some more testing with strips in my eyes, (I can’t remember the name for it) and sent me to an opthomalogist before my next visit. I came back with the report from the opthomalogist and he told me how extremely dry my eyes really are with that report. He said he would like to do a lip biopsy to confirm SS since blood work was negative. He did it and called me a few days later to report that I indeed test positive for SS. That was a bittersweet moment.

I’m so sorry you were dismissed but please don’t give up. Keep searching for answers. Sometimes we have insist on more for our treatment because if it isn’t immediately obvious for them they give up on it too easily.

Wishing you definite answers soon! Michele



drygirl said:

I had the same negative SS blood work so they did a lip biopsy and that came back suggestive of SS. Drs can be so frustrating, I'm having a hard time finding a rheumy dr. near my home that can answer my questions. the wait for one can be hard when you are feeling bad. Keep pressing, you are not alone. DRYGIRL

I live in Arkansas but went to the Sjogren's Center at John Hopkins and saw Dr. Baer plus specialists in every area that Sjogren's might affect. It was definitely worth the cost and the time to go. Although I have Sjogren's, Raynauds and lots of gastro issuses, I still had other strange symptoms and Dr. Baer immediately knew he was seeing Ehlers Danlos. He is an excellent diagnostician and kind and concerned. He calls me back, not a nurse. Great Experience.

Bigmama, it was almost two decades before my blood work came up positive for SS. This, despite the fact that I have had the symptoms so long. I had one test years ago that showed ANA positive, then nothing for what seemed a lifetime. A good doctor should know that the symptoms precede the diagnosis a LONG time before you get consistently positive blood tests, and, what is more, you can have tests be positive once, then not, then on and off. A negative or positive test is not necessarily a good template for how sick you are. Your doctor should have stayed on the line and told you what you need to do now. It is hard to not be disheartened when dealing with an autoimmune disease because they are hard to diagnose. Hang in there. Follow up with the doctor, and if you feel that she is not taking you seriously, find someone who will. Praying for resolution for you. Hugs. I know it is tough, hon.

I am in the same situation, blood test came back negative from my primary care dr. I intend to go see a Rheumatologist. I started having vision problems and went to see my Ophthalmologist (who is a physician); not an optometrist. NINE visits later within a 3 month period, he is positive that I do have Sjogren's. I love my primary care dr and will go back to her.

In your situation, I agree with the many people that have advised you to see another dr. Perhaps a Rheumatologist? Good luck to you.

second opinion for sure, you can have false negatives and false positives in lab work. the journal idea is great too, have your eye dr test your eye for moisture content, it takes about 10 minutes and its not painful but it measure the amount of tears produced. I think its called a schrimers test. that will show if your eye are dry

OK, I have an appointment with an eye dr. October 20th. We'll see what transpires.

Hi Pebbles, we have an EDS group here on Ben's Friends, I am a helping hand there. Let me get you the link. Please feel free to join it! There are some great folks there who understand exactly what you are going through.

Pebbles said:

I live in Arkansas but went to the Sjogren's Center at John Hopkins and saw Dr. Baer plus specialists in every area that Sjogren's might affect. It was definitely worth the cost and the time to go. Although I have Sjogren's, Raynauds and lots of gastro issuses, I still had other strange symptoms and Dr. Baer immediately knew he was seeing Ehlers Danlos. He is an excellent diagnostician and kind and concerned. He calls me back, not a nurse. Great Experience.