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Old 05-18-2009, 01:37 PM   #1
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Sjogren's Syndrome

Is it possible to have Sjogren's Syndrome and not have positive blood tests?

I had dry eyes and the eye physical inserted plugs and has me using drops.

I had a series of oral tests done....all positive for SS, including a lip biopsy.

Now one dr. is telling me I don't have while 3 others are telling me I do.

My concern is that the one saying I don't is a leading neurologist with an excellent reputation.

I just want someone to confirm for me that it is possible to have SS without a positive blood test.

I also suffer from fatigue, brain fog, enlarged lymph nodes and dry skin.

Does anyone have an answer?

Thank you so much!
Judy

 
Old 05-18-2009, 08:46 PM   #2
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Re: Sjogren's Syndrome

Hi there:
Unfortunately, it sounds as though you do indeed have SS. Many doctors really don't have a clue about this disease, and think all sorts of incorrect things like you need positive blood markers to confirm a diagnosis. I have always tested negative for all the blood markers but I have SS. This was determined because I have enlarged salivary glands and parotid glands, all the SS symptoms including vasculitis and brain lesions (originally I was diagnosed with MS because it sure looked like it) and I tested profoundly positive on my lip biopsy. There are some organizations dedicated to this disease. In Canada: the Sjogren's Society of Canada and in the U.S.A.: The Sjogren's Syndrome Foundation. Tell your uninformed doctor to peruse their websites because they both offer medically recognized diagnostic guidelines for this disease.
I get brain fog, too. It can last for days or weeks. For me, I've found forcing myself to get as active as possible with exercise seems to help re-set my immune system and help clear out the worst of the auto-immune disease symptoms. I when I feel like utter filth, this can be quite a challenge. But, I love hiking and cycling in sunshine, and once I'm out in it and moving, I finally start to feel good again. I hope you find your "magic potion" that helps get you back on your feet. I actually also hope that I am wrong and that you don't have SS because no one wants this disease. If you do have it, I will say some prayers that you have a very mild form of it. Best wishes to you.
Surreygal.

 
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Old 05-19-2009, 08:35 AM   #3
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Re: Sjogren's Syndrome

Thank you so much for your quick reply! My eyes welled up with tears of joy to know that I am not crazy!

I too have a brain lesion and they are also looking for MS. However, I really don't have any other indicators of that. In fact, I am going for another MRI next week to see if the lesion has changed/grown.

I did join the SSF here in the US and have the book they published on the subject. I'm thinking of taking it with me to the neurologist when I see him in June.

The fatigue grabs hold of me unexpectedly (although I am seeing a relationship to the flareups with work-related stress) and leaves me flat out feeling miserable for anywhere from 2 days to 2 weeks. Very unpredictable.
Does this happen to you?

I am in the outdoor education field and make an effort to be as active as possible, but am in need of a knee replacement due to an injury which is side lining me somewhat.

Again, thank you for responding so quickly. I feel so much better just hearing what you had to say!

 
Old 05-19-2009, 08:01 PM   #4
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Re: Sjogren's Syndrome

Quote:
Originally Posted by surreygal View Post
Hi there:
Unfortunately, it sounds as though you do indeed have SS. Many doctors really don't have a clue about this disease, and think all sorts of incorrect things like you need positive blood markers to confirm a diagnosis. I have always tested negative for all the blood markers but I have SS. This was determined because I have enlarged salivary glands and parotid glands, all the SS symptoms including vasculitis and brain lesions (originally I was diagnosed with MS because it sure looked like it) and I tested profoundly positive on my lip biopsy. There are some organizations dedicated to this disease. In Canada: the Sjogren's Society of Canada and in the U.S.A.: The Sjogren's Syndrome Foundation. Tell your uninformed doctor to peruse their websites because they both offer medically recognized diagnostic guidelines for this disease.
I get brain fog, too. It can last for days or weeks. For me, I've found forcing myself to get as active as possible with exercise seems to help re-set my immune system and help clear out the worst of the auto-immune disease symptoms. I when I feel like utter filth, this can be quite a challenge. But, I love hiking and cycling in sunshine, and once I'm out in it and moving, I finally start to feel good again. I hope you find your "magic potion" that helps get you back on your feet. I actually also hope that I am wrong and that you don't have SS because no one wants this disease. If you do have it, I will say some prayers that you have a very mild form of it. Best wishes to you.
Surreygal.

 
Old 05-19-2009, 08:07 PM   #5
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Re: Sjogren's Syndrome

Is the brain fog a major component of SS? I have moments of "blurred vision" and am
pretty sure it is because of the SS. I was just diagnosed in February and am trying to
adjust to just how complex this condition is.
I am still coughing after 3 courses of antibiotics for bacterial infection. I know my immune system is compromised...............that is the major kicker with SS......very weak
immunity. My dr. found a swollen lymph node in my neck today and am scheduled for
a CT scan next week. I, too, have the book on SS which is very helpful for anyone
suffering this disease.

 
Old 05-19-2009, 08:10 PM   #6
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vocalist1945 HB User
Re: Sjogren's Syndrome

What connection is the "brain lesion" with SS? Anyone reading this can answer. I would
really appreciate it.

 
Old 05-24-2009, 09:56 PM   #7
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Re: Sjogren's Syndrome

The rheumatologist I go to has suggested I might have it, but the blood tess were negative. I have extremely dry mouth, so much so that I got a fungus on my tongue and throat because of it. I have dry eyes too and joint and muscle pain all over.

Where do you go to get a lip biopsy? Does it hurt?

 
Old 05-25-2009, 10:49 AM   #8
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surreygal HB User
Re: Sjogren's Syndrome

Quote:
Originally Posted by vocalist1945 View Post
What connection is the "brain lesion" with SS? Anyone reading this can answer. I would
really appreciate it.
Hi There:
Sjogren's Syndrome is a systemic illness. This means it doesn't only affect your eyes and salivary glands. It can attack any gland/organ in your body that produces fluid. It's hard to name an organ that doesn't produce fluid, so you can see the potential for extensive damage.
Brain lesions are an unusual complication, as is vasculitis (inflammation of the blood vessels) and unfortunately I have both of these compications.
I was originally diagnosed with MS because I had all the symptoms of Multiple Sclerosis. I had a brain MRI that revealed lesions. My MS diagnosis was later refuted because MS lesions typically heal and then develop in other locations of the Central Nervous System. My lesions were staying static--in one place. This added to making my diagnosis a very difficult and painful process. It was over a decade before I was finally given the correct diagnosis.
If you are experiencing peculiar neurological symptoms, such as foot dragging, bladder incontinence/urgency, numbness in face/extremeties, visual disturbances (holes in the field of vision) etc, then it would be worth seeing a neurologist to determine if Sjogren's has resulted in your developing brain lesions.
Best wishes and good luck.
Surreygal

 
Old 05-25-2009, 11:20 AM   #9
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Re: Sjogren's Syndrome

Quote:
Originally Posted by Rita27 View Post
The rheumatologist I go to has suggested I might have it, but the blood tess were negative. I have extremely dry mouth, so much so that I got a fungus on my tongue and throat because of it. I have dry eyes too and joint and muscle pain all over.

Where do you go to get a lip biopsy? Does it hurt?
Hi There:
A lip biopsy can still give false negative results, so don't be too discouraged if this happens to you. But, if they are done correctly, they tend to be the most definitive way to reach a proper SS diagnosis.
In Canada, lip biopsies are done by Otolaryngologists (Ear, Nose and Throat Specialists) and Oral Medicine Specialist/Dentists.
I had mine done by an Oral Medicine Specialist because she told me she performed these in her office. The ENT doctor wanted this to be done on an outpatient daycare surgery in the local hospital.
My Oral Medicine Specialist (essentially, a dentist who took further studies) used a topical freezing, then freezing via a needle. I sat in a dental chair. She snipped a few spots from within my oral cavity (there is no actual cutting of the lip) and then I left. The whole procedure took just a few minutes. The slides were sent to a pathologist and results were available about a week later. My biopsy came back "profoundly positive", meaning the white cell infiltration was well established.
If you get a lip biopsy done, be sure to insist that the performing doctor take specimens from various sites within your oral cavity. This will give a better analysis as if specs are only taken from one site, you reduce your chances of ensuring the specimen removed was in an affected area. (In other words, you reduce your risk of "false negatives".)
The procedure was painless for me, however my mouth was tender when the freezing came out. A word of caution: avoid any acidic foods for about 24 hours after the procedure. I ate frozen strawberries on pancakes after my procedure. (My comfort food!) Even through the freezing (although it was starting to wear off a bit by then) I could feel discomfort. After the freezing was completely gone, it was painful eating acidic foods, but really only for about 24 hours.
Good luck and best wishes to you.
Surreygal

 
Old 06-06-2009, 12:44 PM   #10
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Re: Sjogren's Syndrome

Just wondering if anybody has responded to you about the brain lesions?

 
Old 06-06-2009, 09:41 PM   #11
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Re: Sjogren's Syndrome

Quote:
Originally Posted by saiello View Post
Just wondering if anybody has responded to you about the brain lesions?
Hi there:
I'm going to try this again! I hate computers. I was typing away and everything suddenly disappeared.
The answer is "no", I have received no news from any kindred spirits, I am afraid. I wish I had, because I've developed new and concerning symptoms. I think I'm now getting petit mal (not the convulsion type) seizures. Plus, I recently had a severe headache that lasted several days, the caliber of which I had previously only known when I later learned that the lumbar puncture I'd had done had produced a brain bleed. That unbearable headache also lasted for several days and rendered me completely debilitated. This time after it subsided, I then had 4 days of electric shock sensations that coursed up my left leg originating in my left small toe. It was like sticking my toe in an electrical outlet, and these sensations did cause my body to react in a convulsion or spasm like way. I was really glad when those sensations stopped happening.
The seizures are weird. I start to get an impending sense of doom, and my memory goes strange, like there is something really important I need to remember right now, but I can't quite put my finger on it. Shortly thereafter the episode will progress to a highly unpleasant experience, where I also lose my appetite and feel nauseous, but I don't lose consciousness even though I close my eyes. The episodes leave my head feeling foggy and "off" for the rest of the day.
Anything can cause them. I've had them while sitting and quietly eating my lunch and chatting pleasantly with a colleague at work. I've had them while enjoying a gentle bike ride on a beautiful sunny day. I was awakened last week in the middle of one of these episodes, twice on the same night. (I awoke to another unbearable headache that lasted a couple of days.)
I have a horrible feeling that my neurologist is going to say that the vasculitis I have elsewhere in my body is now happening in my brain, and causing cerebral vasculitis, too. I think he may say that I am experiencing small brain bleeds, like small strokes. He runs the stroke clinic in a very large hospital in Vancouver so at least I'll know that whatever he says, I can believe as he is an expert in this area. But, I sincerely hope my opinion about all this is wrong. Cerebral vasculitis can, and often does, produce sudden death. Not a nice thing to have to live with. Do you know of anyone who has experienced anything like this? I welcome any and all comments regarding this or anything else to do with SS, and thank-you for your concern. How are you doing? Take care.
Surreygal

 
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Old 06-07-2009, 11:30 AM   #12
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Re: Sjogren's Syndrome

Thank you for replying. Doctors are not sure what I have. One doc says vasculitis but another says no. I've had headaches, but nothing like what you're experiencing. I've had one strange episode last year with my vision and walking but luckily, since then that has not happened again. Just the headaches came back and being put back on a higher dose of prednisone helps. He's thinking he wants to put me on Cellcept and take me off prednisone...we'll see...go back to the doctor in a few days.
Take care of yourself and i'll keep you in my prayers!

 
Old 06-08-2009, 06:21 AM   #13
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Re: Sjogren's Syndrome

How do you know if you have vasculitis? What tests do the drs. do to confirm this?
And would numbness in the right leg (upper
front) have anything to do with Sjogren's? What about brain fog and generalized
fatigue? And does low WBC always go with Sjogren's?

Last edited by vocalist1945; 06-08-2009 at 06:23 AM.

 
Old 06-08-2009, 08:07 AM   #14
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Re: Sjogren's Syndrome

Quote:
Originally Posted by vocalist1945 View Post
How do you know if you have vasculitis? What tests do the drs. do to confirm this?
And would numbness in the right leg (upper
front) have anything to do with Sjogren's? What about brain fog and generalized
fatigue? And does low WBC always go with Sjogren's?
Hi There:
Vasculitis is an inflammation of blood vessels, sometimes small and/or sometimes large vessels. Tests called angiograms are used to determine vascular health. But, these tests can be a bit invasive as they use a contrast substance. A good clue as whether or not you are suffering from vasculitis is to examine your body. Do you have a lot of bruises, particularly very small ones, that crop up in places where you wouldn't have inflicted injury and therefore you'd question why the bruising occurred? (For instance: I look down and see 1/4 inch size bruises in places like the spaces between my fingers, on the tops of my feet, etc.)
Numbness can be caused by vasculitis. If the blood vessels are damaged, they can't supply nerves properly with oxygen and nutrients.
Vasculitis can also produce brain fog. When the vessels are damaged, they also don't transport waste products properly to the disposing organs. A build up of these waste products can cause fatigue, nausea and brain fog.
A low white blood cell count can accompany Sjogren's. It does not always cause low WBC, though. People with SS produce white blood cells that do not function properly. Instead of attacking intruders, these WBCs invade organs and tissue and cause destruction instead. My WBC count was good last summer, in the normal range even towards the high end. A couple of months ago it was barely in the acceptable range it had dropped so low.
Unfortunately all these active WBCs frequently cause problems instead of help us. That is the nature of auto-immune disease.
I wish you well and take care.

 
Old 06-09-2009, 08:28 PM   #15
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Re: Sjogren's Syndrome

I was diagnosed with Cerebral Vasculitis in March 2007. Unfortunately, the diagnosis came in hospital after having a stroke. Prior to this, there weren't any major signs - blood work was normal without elevated ESR.

I had been having some minor headaches and had complained about brain fog for quite a while. This had been put down to fatigue (normal with SJS) !!
After initial treatment with cyclophosphamide and prednisone, I am now on Imuran to keep my immune system under control.

Hope you get a diagnosis soon

 
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