My doctor did bloodwork to check me for Sjogren's and of course it came back negative. I am so upset because I have every symptom of it. I just knew they were going to call & tell me they finally figured out what is wrong with me. What can I do if I have all the symptoms but bloodwork comes back negative for it? My husband thinks I should just suck it up & that I am just lazy when I need to take a nap. I know he thinks I'm a hypochondriac. I just want to get a diagnosis and be able to try to treat the condition and finally be able to know what is wrong, and be able to show my husband there's a reason for everything. I don't know where to go or what to do from here. Are there doctors that will treat the symptoms of SS or do they have to have a positive blood test?
Hello Susan. I think a significant percentage of people with Sjögren's are seronegative. I am. But I do have high inflammation markers (ESR and CRP) and a positive ANA. So it's just the specific antibodies for Sjögren's that I don't have.
The rheumatologist suggested that I have a lip biopsy although my parotids were fine and so are my teeth just now. I was gobsmacked that it came back 100% positive for Sjögren's even though I was originally diagnosed with seronegative RA.
What I would say though is that there are many other diseases and conditions that can cause dry eyes, mouth and fatigue so doctors need to rule these out first. Few people get a diagnosis just on symptoms alone . There should be noting to stop your symptoms being treated topically with preservative free eye drops, lacrilube eye gel and saliva stimulants. There aren't any Sjögren's specific meds so you need to work out how far to push doctors for answers.
I take it that you've ruled out thyroid disease, vitamin D and B12 deficiency and Ceiliacs etc?
Susan, could you get a lip biopsy? That's another way to confirm. Also, an ophthalmologist can do testing to see how dry your eyes are. I've tested positive and negative for sjogren's antibodies at different times. My eye dr (who was head of the sjogren's foundation board) said that the autoantibody levels don't necessarily correlate with disease status so I think you could have negative blood work with Sjogren's. get to a good rheumatologist.
Hi Susan you could get a lip biopsy or have a schirmers test done which is tear production tests I would go back to the Dr and ask for a referral this is what I did then got to see a rheumatologist..I personally think without saying this I would be where you are now..I wish you luck and hope you start feeling better soon..remember everybody has a right to a referral so push it.
If there's an in-person support group near you, drag your husband to it. His eyes will be opened.
Everyone is right that many of us don't necessarily test positive. The lip biopsies sometimes give false negatives, also so use your own judgment. Many of us had clear symptoms for years or decades before diagnosis, so act as if you've got it by taking care of your eyes &teeth now. Get a dry mouth toothpaste and rinse & use properly. I've used biotene products since the '90s. Always wait 30 minutes after eating or drinking before brushing your teeth. Many of us use xylitol-sweetened gums & breath mints as oral moisturizers. Avoid chemicals - preservatives - in your food as much as possible. Some swear by specific diets, while others swear against them :-)
Hang in there. At some point you're apt to need vaginal moisturizers for sex ,,, sometimes it's easier with those lovely condoms souniversally hated.
We're always here. Someone else may have suggestions re: disbelieving husbands. In my support group in person, we've got some men with the disease. If we've got some on here perhaps they'll speak up.
I know she checked the 2 that are what they normally check for SS. I think it might have been Ro & La? I will get them to send me the results. The nurse was goin to talk to the doctor to see if there was anything else that she could check for. She did say I may need to go see the Rheumatologist. I don't know if she checked the inflammation markers or the ANA. She did check my thyroid & for diabetes & they were normal, my vitamin D & B12 are fine too. I just started Restasis & I have been using Refresh Liquigel.
My GP actually told me to go see an Ophthalmologist for my dry eyes instead of just the eye doctor. I guess my next course of action would be to have the lip biopsy done.
Thank you! It's so frustrating to know something is wrong & suffering with it and no one can tell you what is wrong.
Well the lip biopsy would be the main test to confirm SS if your bloods are all negative. I don't know if it's worth having this or not for you. Beyond what you are getting for your eyes and mouth there aren't many treatments and if the lip biopsy came back negative then you'd be back to square one without clarification. You shouldn't need affirmation to prove anything to your husband but I can understand why you feel you do. My lip biopsy sealed the deal but my husband still thinks I'm lazy!
Thank you. I think I do need a support group! My husband is not going to go to a meeting though, lol. He MIGHT go to one if I was actually was diagnosed with it. I am going to see if I can find a good Rheumatologist and hopefully that will provide some resolution. When they called and said "everything is normal" I just wanted to cry. I'm depressed now cause I feel like I am back at square one.
Ps this is due to so many health information sites misrepresenting Sjögren's as "condition" or "disorder" only affecting our eyes, mouth and vaginas rather than a serious autoimmune disease which can affect the entire body and can be found in people of any age. There is a myth that only women of a certain age get it and this is unhelpful and, from what I can gather, inaccurate.
I felt exactly the same but all my bloods shown was my white blood cells were extremely low but he still didn't show me any support so I went on sites and came up with my own diagnosis and went back in and demanded a referral ..he actually had never heard of the disease but looked at my blood results again ..but I'm new to this and have lots of appointments coming up..
So frustrating! Susan I facilitate a SS support group here in the US. Most of the Sjoggies I know (if seronegative), just seek a doctor who is not hung up on diagnosing by bloodwork. There are physicians who believe in treating the patient regardless of what the bloodwork says.
Also, there are patients (like myself) who have immune deficiencies and cannot produce the antibodies that doctors look for to diagnose. Hopefully, you can find a doctor who will treat your symptoms.
Good Luck!
SjoDry
Hello Susan, I had 3 positive blood test results and my rheumy says they are false positives but my neuro knew I had it before the blood tests and says the tests are ALL corect. Surgeon says I have it too and was the most likely cause of my posterior nose bleed from being so dry. Like all medical conditions you have to go by your gut at times. Many dr's are gonna give you different opinions. Find a dr you are comfortable with. As far as your hubby, not my business , but..sorry he doesn;t understand your illness 
I really hope that changes. Best to you 
Susan I can hear your frustration, and often we need to be able to name something before we can move on. You could change doctors, insist on more tests etc, but in the meantime I suggest you treat the symptoms you have. For many of us "treating SS" means alleviating the symptoms - eye drops, lozenges, a range of dry-mouth toothpastes and mouth products, find and see a sympathetic dentist very regularly (Up to 4 times per year), yoga/swimming/tai chi.....whichever exercise you find most supportive and relaxing, rest as needed, if you have RA symptoms you might benefit from physio/massage............others could add to the list of steps you can take to alleviate symptoms, none of which require a diagnosis, a doctor, or are in any way harmful to your overall health. It is very helpful if you can "relax into" this way of life. My husband is very supportive, but doesnt need to hear about every ache and decision. Most of what I do to treat my symptoms are just part of my dressing/bathroom for the day and I do not draw attention to any of it. You can keep hitting the brick wall or make a conscious decision to take as much of your health as possible into your own hands. Pursue the medical until you are satisfied, but in the meantime do as much as you can for yourself. Best wishes.
I wouldn't tell him what the meeting was for. Just tell him you need him with you. Our group alternates, every other meeting is just a sharing opportunity while the other meetings are programs. I'd take him for sharing time, and ask how many people had the disease for years before they got diagnosed. He would be shocked.
We only meet 4 times yearly. Don't know about other groups. But you'll always have us here online.
Good luck.
I agree wholeheartedly with most of this. But I think what Susan is actually complaining of most is the fatigue. And without a name it's harder to self manage or pace as much as the disease often requires us to. I have a friend who is so badly afflicted by fatigue that her husband has virtually taken on a full time caring role. So what works for you and I may not work if a partner is calling it laziness.
Good point, Tumtum. For all my ex's faults, he never doubted my pain or called me lazy.
Second opinion
The eye test and the lip test they use for Lupus as well, you need to get a Rhumatologist that nows SS other i'm afraid you won't get very far, I know I didn't until I found one local who could give me the answers, it took two appointments and I knew Cath