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Old 06-19-2009, 12:16 PM  
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Question Is it possible to have negative blood tests but still have the syndrome?

It all started almost 3 years ago where I was diagnosed with burning mouth syndrome, but they couldn't find any reasons for it. My mouth was also very dry but that was mainly due to the meds that I was on for migraines prevention since when I stopped the meds the dryness improved immensely.
I also had anemia due to heavy periods and they said burning mouth could be due to lack of iron. I went on iron tablets and it improved. Then I started having these pains in my eyeball only the left eye, and the eye was red and looked irritated and left eye looked smaller, I saw a specialist and he diagnosed me with epithelial ersosion that is wehere there is tear and he said it could be because of an injury I remember my little girl's hand had hit my eye couple of weeks before, so I started taking lubricants. Then at the same time I started having digestive issues and was diagnosed with acid reflux, now after 18months the eye pain is back and my burning mouth is back, I also get occcasional pins and needles in my hands, also have this back pain, and heavy feeling in my lower legs, which they hurt if I stand on them for the long time, and I have anemia again.
3 years ago a nuerologist tested me for all the markers and said they were all negative.
Could they have been negative and I still have the disease?
Could I die from this? I am tired of seeing so many different doctors for different symptoms where the cause could be this syndrome.
I have to say my eyes have been feeling rather dry for the past couple of days.
Also I remember the eye specialist who diagnosed the erosion said he sees an inflamation which he gave me drops for them, he is supposed to be a very good specialst, if I have the syndrome wouldn't have he guessed?

 
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Old 06-20-2009, 09:47 PM  
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Re: Is it possible to have negative blood tests but still have the syndrome?

My blood work was negative. I have had the dry eyes and mouth for years. I had a positive schneirs test(spelling is wrong I know). I didn't have big issues with it and didn't know it could have other symptoms.
I have reynauds, fibroymyalgia, bloating, extreme sweating, elevated liver enzymes, tingling, body cramping, numbness, fatigue, burning, vein in left side of neck swells, tachycardia and multiple unusual calcifications and abnormal brain shrinkage to name a few because I can't remember the rest right now.
My rheumotologist under my new insurance plan diagnosed me with silica syndrome but without a lip biopsy since my blood work was normal won't diagnose it as sjogren's.
I just had a lumbar puncture and it was normal
I understand a lip biopsy is the test that is more conclusive but there should be like 5 glands to be accurate. I am holding off until my next brain scan before I go through the biopsy. It sounds like it hurts and I am a whuss

 
Old 06-22-2009, 12:56 PM  
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Re: Is it possible to have negative blood tests but still have the syndrome?

I am ever so sorry about all your symptoms and suffering, Thanks for your reply.
Hope it all goes well, I have had a biopsy from inside my mouth, but not a lip biopsy, and it wasn't that bad.
Could you please let me know as what is schneirs test? what do they test?

 
Old 06-22-2009, 10:11 PM  
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Re: Is it possible to have negative blood tests but still have the syndrome?

ok the correct spelling is schirner test. It is to see how dry the eye is.

 
Old 06-24-2009, 06:46 PM  
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Re: Is it possible to have negative blood tests but still have the syndrome?

The test is called a Schirmer's test. It is performed by placing a small piece of filter paper inside the lower part of the eyelids. You then close your eyes for a few minutes and the amount of moisture on the filter paper is measured to check for dry eyes.

 
Old 06-25-2009, 05:23 PM  
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Re: Is it possible to have negative blood tests but still have the syndrome?

Quote:
Originally Posted by Mel52 View Post
My blood work was negative. I have had the dry eyes and mouth for years. I had a positive schneirs test(spelling is wrong I know). I didn't have big issues with it and didn't know it could have other symptoms.
I have reynauds, fibroymyalgia, bloating, extreme sweating, elevated liver enzymes, tingling, body cramping, numbness, fatigue, burning, vein in left side of neck swells, tachycardia and multiple unusual calcifications and abnormal brain shrinkage to name a few because I can't remember the rest right now.
My rheumotologist under my new insurance plan diagnosed me with silica syndrome but without a lip biopsy since my blood work was normal won't diagnose it as sjogren's.
I just had a lumbar puncture and it was normal
I understand a lip biopsy is the test that is more conclusive but there should be like 5 glands to be accurate. I am holding off until my next brain scan before I go through the biopsy. It sounds like it hurts and I am a whuss
Hi there:
All my blood tests that are markers for SS have always been normal, including sed rates which typically are elevated in almost all auto-immune diseases. I had a lip biopsy which came back profoundly positive and so I was finally given a diagnosis, many years after symptoms had commenced. The lip biopsy was no big deal--I too am a "wuss"! Mine was done in a dental chair with local freezing. It only took a few minutes. My oral medicine specialist (a dentist with more extensive training) took a few snippings from very tiny salivary glands located in various places inside my mouth. I had a tiny suture placed in one area. I had the biopsy results within 2 weeks. One thing I would recommend to anyone having that test is to be very mindful not to eat anything acidic for a few days afterwards. I had frozen strawberries (on my pancakes--my comfort food!) while my mouth was still frozen afterwards and nearly hit the roof with pain! Acidic foods really sting, for a day or two anyways afterwards. Otherwise, I had no problems with it.
I have CNS involvement. I had white lesions that show up on my brain MRIs. Have you ever had an MRI of your brain done? I was originally diagnosed with Multiple Sclerosis having all the neuro symptoms, but that was refuted because my lesions are static--they don't move and develop elsewhere in my central nervous system, which is a hallmark sign of MS. Sjogren's Disease can cause MS like symptoms, by demylenization and vasculitis (inflammation of blood vessels) that feed the nerves. I have lots of burning, tingling and numbness in my fingers, toes, cheeks and lips. It is all transient. I also get "foot drag". I will be walking at a brisk pace distracted in my own thoughts then nearly do a face plant from tripping over my non-responding foot. It is embarassing to say the least. I also get bladder urgency and incontinence, acute unexplained nausea, severe headaches, visual disturbances (holes in my vision, lines, spots, etc), rashes, etc. Sjogren's can and does cause all of these symptoms from time to time, and then they disappear as curiously as they came.
The Schirmer test to which you refer is of limited value, I understand. It simply measures the amount of tears you make. I clearly have SS, but if I'm really upset, I can produce a ton of tears when crying my heart out. (Not to mention a gallon of snot! So much for being fluid defficient!) I think the "dry eyes" thing is fairly subjective, so I wouldn't place too much emphasis on the Schirmer test, either. The "gold standard" does seem to be a lip biopsy, but unfortunately this too can give false negative results. Still, I think it is your best bet for a diagnosis.
As for your insurance program, I live in Canada so our health care system is different. Sicca Syndrome is too vague to really mean anything. I am surprised any health care insurer would even recognize such a term. I think you would do better with a firm SS diagnosis, but I am only speculating as Canada has an entirely different health care system.
You mentioned elevated liver enzymes. Some of mine are chronically a little high. That too can happen in SS. SS attacks the organs and glands of the body that produce fluid. Well, considering the human body is 75 percent fluid, name a gland or organ that doesn't produce fluid! Yes, it can cause some liver dysfunction as well. You'd do wise if it doesn't cramp your lifestyle too much to give up anything that makes your liver work harder to clean it out of your body, such as tobacco, alcohol and any sort of unnecessary medication or other chemicals (junk food contains a ton of them!). Your liver has many functions, but detoxifying is a huge one. Lessening that burden will help to make you feel better. Also, watch Vitamin A supplements as these can be liver toxic.
Anyhow, I wish you all the best. Take good care and please keep me posted.
Surreygal.

 
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Old 06-25-2009, 08:09 PM  
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Re: Is it possible to have negative blood tests but still have the syndrome?

thank you for the response. I guess I will have to proceed with the lip biopsy. I will wait after my next brain scan in October to see if there are any changes. I can't have a MRI as I was burned in one. Apparently the titanium plates in my face from a surgically broken jaw have metal bits in them. The neurologist is frustrated because a MRI would probably help identify what these calcifications are. I have had restlyane in my lips before and ouch the injections really hurt so I was basing my fear of pain on that.
I don't smoke, drink or eat high fat. I don't drink soda. I used to maybe have 2-3 cans a week but since I was surprised with an osteroporosis diagnosis I dont drink it. I dont use artificial sweetner, just stevia. I eat meat maybe once a week, and for the most part I dont eat flour and sugar. I did have breast implants and a rupture so after being so ill I had them removed in 1992. I was left with the fibromyalgia and reynauds but was doing ok until a few years ago when the additional symptoms started.
The bladder spasms drive me nuts as does the shaking. When I get these flair-ups I suddenly get very sleepy and have to lay down as I get very weak. I also have been told by the ER doctor I hyperventilate. Is that a symptom also of sjogren's? He says the temporary drop in potassium causes the cramping and said I needed follow-up. Well I have Kaiser insurance and it has taken a few years to get doctors to pay attention to me as they were quick to say it is anxiety. It wasn't until the brain scan that I suddenly developed some credibility and respect.
Is bloating another symptom? I retain water, but the cardiologist doesn't seem concerned. A few years ago I had a flat stomach, now I have a belly. I know I am getting up there in age but geez, this all happened at once.
I have been up since 4 am because I was trembling. Very frustrating not knowing what this all is. thanks Mel

 
Old 06-29-2009, 11:04 AM  
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Re: Is it possible to have negative blood tests but still have the syndrome?

Quote:
Originally Posted by Aryana70 View Post
It all started almost 3 years ago where I was diagnosed with burning mouth syndrome, but they couldn't find any reasons for it. My mouth was also very dry but that was mainly due to the meds that I was on for migraines prevention since when I stopped the meds the dryness improved immensely.
I also had anemia due to heavy periods and they said burning mouth could be due to lack of iron. I went on iron tablets and it improved. Then I started having these pains in my eyeball only the left eye, and the eye was red and looked irritated and left eye looked smaller, I saw a specialist and he diagnosed me with epithelial ersosion that is wehere there is tear and he said it could be because of an injury I remember my little girl's hand had hit my eye couple of weeks before, so I started taking lubricants. Then at the same time I started having digestive issues and was diagnosed with acid reflux, now after 18months the eye pain is back and my burning mouth is back, I also get occcasional pins and needles in my hands, also have this back pain, and heavy feeling in my lower legs, which they hurt if I stand on them for the long time, and I have anemia again.
3 years ago a nuerologist tested me for all the markers and said they were all negative.
Could they have been negative and I still have the disease?
Could I die from this? I am tired of seeing so many different doctors for different symptoms where the cause could be this syndrome.
I have to say my eyes have been feeling rather dry for the past couple of days.
Also I remember the eye specialist who diagnosed the erosion said he sees an inflamation which he gave me drops for them, he is supposed to be a very good specialst, if I have the syndrome wouldn't have he guessed?

Hi there:
I'm sorry to hear of all your grief. It does sound as though you may have Sjogren's. My blood markers have always been negative, but I have the disease. A recent CT of my brain showed a bit of brain shrinkage in me, too. I have previously always had MRI scans which didn't comment on shrinkage, but did note that I have several white lesions. I have MS like symptoms, and have had for many years and I was wrongly diagnosed with MS at first. I frequently have very red and irritated eyes. SS dries them out. In fact, SS dries out all the glands and organs of the body that produce fluid. Since we are primarily made of water, that doesn't leave much SS doesn't attack. All the weird, chameleon-like symptoms you are experiencing can be caused by it, and these can come and go as body parts temporarily correct themselves.
A lip biopsy is pretty much the "gold standard" for diagnosing this disease. It was what finally diagnosed me. This too can give false negatives, however it is the most likely way to get a firm answer. Blood tests are frequently not indicative of this disease.
To answer your question about is this is a fatal disease, it typically is not. Having said that, it does increase a person's risk of developing Non-hodgkin's Lymphoma by 44 times over that of the general population. It also can cause acute complications by drying out tissues. One example is the heart is bathed in a fluid, which is enclosed by a membrane called the pericardium. If this fluid starts to dry up, then you can suffer heart problems.
So, it is imperative that if you have this disease, you are regularly checked by a rheumatologist, particularly one who has a good understanding of Sjogren's Syndrome. There is an American SS Society, the Sjogren's Syndrome Foundation, which is a valuable resource to persons with SS. I am a member and receive regular newsletters from them, which discuss many SS issues including treatment options, both current and those being trialled.
As I am Canadian, I am also a member of the Sjogren's Society of Canada. It is a fledging, similar organization as the U.S. counterpart. Both of these organizations have helped me immenseley. These organizations also offer support groups and can give you information about one in your community. Talking to "kindred spirits" has been a huge help to me, too. If I'm having weird symptoms, and then I learn that other persons with SS have it too, then I feel less afraid.
I wish you well. Take good care and please write again as I am concerned for you.
Surreygal.

 
Old 09-20-2009, 12:11 AM  
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Re: Is it possible to have negative blood tests but still have the syndrome?

Hi there...

I also have had nothing but negative ANA tests, yet with my severe dry eye (2 in left eye, 3 in right), dry skin (within an hour after a shower, even with slathering on lotion I look like I have been dusted with powder) and dry mouth (my teeth are in just horrible shape thanks to that) they concluded it was Sjogren's even without a positive ANA for it.

They also believe that I might have Scleraderma Sine Scleraderma (the gastric issues), but my ANA is actually very below normal for everything... so my Rheumatologist has decided that she will have to go by symptoms and other halmarks and not the blood tests.

One note on Dry Eye... it makes people think that the eye never tears... but there is a major difference between lubricating tears and the kinds of tears that come from emotion. People with dry eyes might have very watery eyes from time to time... one eye or another tearing up out of the blue. These tears are nothing but saline and have no lubricating fluids in them at all. When looking for eye drops for dry eye, pass the saline drops and look for items that have the word "lubricating" or "Artificial Tears" on the packaging.

When looking for skin lotions, keep away from water based or perfumed lotions (they often have alcohol to disperse the scent) and instead choose cremes and ointments. (they are heavier and may be greasy, but lotions often do little for severely dry skin)

Avoid lipstick!!! It is very drying... instead use lip tints and gloss and at night petrolium jelly on your lips. Avoid alcohol based mouth washes, they can dry your mouth out even more and make you more uncomfortable, this will mean avoiding anything that reads "kills the germs that cause bad breath". Instead use ones that are either listed as a rinse and not a mouth wash or ones that are marketed for dry mouth. (I will not list brands here... but they are found on most shelves with the mouth washes, they might cost twice as much, but the comfort will be worth it)

Replace that humidifier next to your bed in the winter (those dry achy months) with a steam vaporizer... not only do they not use filters (costing less) but they put much more moisture into the air on average.

Omega-3 Fish oil capsuls should become your new best friend (if you can take pills)... they do amazing things for dryness.

Carry your own paper towels to use in public restrooms so you never get stuck using a forced hot air hand dryer.

Antibacterial gel waterless hand sanitizer (a must during cold and flu season to have with you all the time) can dry your skin out... but you can get it with aloe and vitamin E and/or moisturizers rigt next to the regular kind on the shelves.

Last edited by PADutchess; 09-20-2009 at 12:12 AM.

 
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Old 09-26-2009, 09:12 PM  
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Re: Is it possible to have negative blood tests but still have the syndrome?

Hi There:
My ANA, ENA and sed rate have always been normal, yet a lip biopsy confirmed a well established disease process of Sjogren's Syndrome, so YES, you can have negative blood tests and still have the disease.
The other respondent had some good comments. I am an avid cyclist and frequently have water literally pouring out of my right eye when I'm on my bike. It is a mistake to believe our eyes won't tear up and water. In fact, this type of tearing leaves my eyes extra dry afterwards. \
If your rheumatologist is putting up road blocks regarding your care, find a new one. You need that doctor to listen to you and be your advocate.
Good luck, take care, best wishes and know you are not alone.

 
Old 10-04-2009, 10:19 PM  
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Re: Is it possible to have negative blood tests but still have the syndrome?

surreygal, do you have alot of pain raising your arms? If I reach for something I get sharp pains that run down my arms.

 
Old 10-07-2009, 08:51 PM  
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Re: Is it possible to have negative blood tests but still have the syndrome?

I sympathize with you! I was diagnosed with Sjogrens about 20 years ago.

Sounds like you have Sjogrens or a related disease. Often, if you have one auto-immune disease you have several more.

I had the same thing happen. They could not put a name to what was happening to me. I got so bad I could not stand up straight and was in terrible pain. I was mis-diagnosed with Ankylosing Spondylitis (sp?) for many years & it was no wonder I did not get better! I could not work as I could not get in or out of my car and went on disability. Believe me you are better off working as you make a whole lot more $$$!!!

It is so hard to find a good doctor and very frustrating. You think you are going crazy. I hope you can find someone to help you soon! Keep a diary and you will see that is key to finding out what may make things worse.

Ask your eye doctor to suggest some good Rheumatologists. I am sure he has dealt with many.

You also need to see your dentist and get your teeth cleaned 4 times a year or you will have problems. Your dentist may know of a good Rheumatologist also.

Try to stay away from Gleutin and Dairy. Stay out of the sun. Try not to be around any "fumes" meaning cleaning fumes, dust or anything that would not be healthy to breathe. No eye make up, no hair color or hair spray, no nail polish. This is all trial and error and you will learn if you keep a diary what makes you flare. Florescent lights bother me also!! I would go to the grocery store and have the flu by the time I left!

For your eyes, Refresh Tears help a lot and you can get them over the counter.Take Fish and Flax oils. My Opthamologist recommended this and it helped with the painful joints and dry skin and eyes.

I saw many doctors till I was correctly diagnosed and treated. Keep copies of your labs. Use different labs and see different doctors till you get some relief.

A good Rheumatologist is hard to find.

Check the Lupus and Sjogrens sites for links to doctors in your area. Another option is find a good Allergist/Immunologist to give you some direction, and relief of your symptoms.

It is amazing in this day and age that you can use the same lab for the same tests and get different results.

I wish you luck! Keep watching the Lupus and Sjogrens sites. Look at AARDA and the IDF sites. There is a lot of info out there but you have to be your own advocate

Good Luck - Don't give up!

Face book has a Sjogrens site. I have met friends there. Everyone is different. Every Sjogrens is different.

 
Old 10-08-2009, 07:32 AM  
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Re: Is it possible to have negative blood tests but still have the syndrome?

DonnaDMay, I had a great rheumotologist who had diagnosed me with mixed connective tissue disease. Silca Syndrome, though I swear he had said sjogren's. However, Kaiser doesn't seem to want to accept his reports they want to start over with everything which is annoying.
I have seen two kaiser rheumotolgists so far. The first one I refused to go back to. He looked at my paperwork that I brought in and wrote in sjogren's on my office visit summary. However, the rest of the time he spent bad-mouthing my previous rheumotologist who had been very verbal against breast implants years prior to the publicity. I then went to another kaiser rheumotologist 50 miles away who wasn't interested in anyone else's opinion. She diagnosed me with the sicca syndrome because my ana was negative. She did offer to do a lip biopsy but warned me it was a horrible procedure. (after the breast biopsy I had yesterday, I think I could deal with it) I told her I had read that sjogrens can cause calcifications in the brain. She said that is true but I wouldn't be able to move. Whatever...I should be having my brain scan again within the next week.
thanks for responding.

 
 

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