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Diagnosed with Sjogrens but not showing in blood work

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Sjogren's Syndrome
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Posted 4/20/2014 3:45 PM (GMT 0)
Has anyone ever heard of this?  I do have every symptom of Sjogrens and am miserable but Sjogrens does not show up in my blood work (or any other autoimmune disorder).  My inflammatory factor was at 46, which is very high, for two years and is finally down to 20. 
Posted 4/21/2014 5:26 PM (GMT 0)
MaggieMc it's really unfortunate, but autoimmune diseases often take a long time to diagnose. Sometimes it just takes time for your antibodies to form, but sometimes it's just physicians you can't connect the dots. It took me two years and 13 physicians to be diagnosed with lupus and those two years were the most miserable, frustrating years of my life.

If you can find a doc who will treat your symptoms until you're diagnosed it's a great help. Don't give up! Love, Butterflake
Posted 4/22/2014 12:22 PM (GMT 0)
Hi
You may have read by posts already but all my bloods came back negative except white cell count low. I had been suffering with dry mouth gritty eyes and fatigue for about 2 years. It was my dentist who referred me to an ENT specialist. Luckily my ENT doc decided to do a lip biopsy in conjunction with the eye doc whom I had been attending for dry eyes. Initially the biopsy came back negative but both doctors not happy as felt I had a lot of symptoms (bar blood work) and asked for a deeper exam, which came back showing dense infiltration around the salivary glands. This shows you need to keep going for proper dx. ENT doc said not all SS patients have positive blood tests but only way to really get a proper diagnosis is with a lip biopsy.
Good luck
Reme
Posted 4/22/2014 1:42 PM (GMT 0)
Thanks to both of your for your help. I am going to look into the lip biopsy.

I have been ill for 3 years and still nothing shows in the blood, except for the high inflammatory factor. My white blood cell count was a slight bit low on my last blood test 3 weeks ago.

My first doctor did a spinal tap and the only thing that showed up was high white blood cell count. He said that indicated that I have an autoimmune disorder.

Anyway, when I last visited by heart doctor he told me that I don't have Sjogrens. He stated it would show up in the blood work so the other doctors are wrong.

I am to the point that I don't know what to believe. That is why I am in this chat room.
Posted 4/22/2014 5:20 PM (GMT 0)
Hi Maggie - I agree with the others...sometimes bloodwork is not positive but you can receive treatment for sjogrens if  you find a rheumatologist who is willing treat based on symptoms.  Also many folks do not test positive for sjogrens but it is strongly felt by medical professionals that they do indeed have it.  There is a new test specifically for sjogrens but I cannot recall the name of it - I believe it became available in January of this year - try to research on the internet and ask for that test as well.  If after that test it is still negative, find a rheumatologist who will treat based on symptoms.

Plaquenil is often first line of defense and fairly benign in its adverse effects.

Wishing you luck.

Posted 4/23/2014 3:21 PM (GMT 0)
Hi Maggie,

I too have all the symptoms of Sjogren's and have been suffering for over a year now.  My Rhuemy says it's my thyroid and my endo says that certain symptoms that I am dealing with don't have anything to do with the thyroid ie:  glands on side of neck tender....but he put me on hyperthyroid medicine as I am slightly high.  I am keeping track of my symptoms on a daily basis.  I have had two positive ANA tests and the last one negative just recently.  I was fine the night before last and when I went to sit and eat my dinner the muscles in my neck tensed up something fierce...I couldn't eat as I was afraid I was going to choke.  So I drank slowly the rest of the evening...even liquids pool in my throat at times.  Today I have nausea and my ears are both hurting...but when I go into see ANY doctor....they say everything is clear..no ear infection.  I'm waiting to see how my next thyroid blood test comes out...and when I am fine I'm making another appt with my rheumy to see what he is going to say is causing it this time!  Hang in there Maggie...your not alone.

Barbara804

Posted 4/24/2014 1:53 PM (GMT 0)
Thanks everyone! Ahhh, yes I suffer with swollen parotid glands, choking, dry mouth (hence, bad teeth), severe pain in my eyes (even though I have tubes and prescription drops and wear sunglasses), severe pain in my legs that comes and goes (usually because of a front passing through), one pupil dilating and not the other, hiatal hernia, polyps in the stomach, mitral regurgitation, vision issues and it goes on and on. I was diagnosed three years ago, but still nothing is showing in my antibody blood test. The doctor tests me every 3 months. I don't know; you would think something would show up by now in the blood work. Oh and the fatigue is the pits.
Posted 5/8/2015 3:25 AM (GMT 0)

MaggieMc said...
Has anyone ever heard of this? I do have every symptom of Sjogrens and am miserable but Sjogrens does not show up in my blood work (or any other autoimmune disorder). My inflammatory factor was at 46, which is very high, for two years and is finally down to 20.


Yes My husband has every symptom and does not show in any blood work. he has had a million dollar work up , including a PET Scan has lost 65 lbs in 7mths isvery fatigued, has thrush, weak, abdominal pain, diagnosed dry eyes, mouth, has diariaha IBS and deeply depressed now HELP!
Posted 5/9/2015 7:35 PM (GMT 0)
My factor was 49 and is now 18. There is a lip biopsy that can be done to c if u have Sjogrens. Also, I had a spinal tap, which is something u really need to watch. Make sure the doctor performs these a lot or this is his specialty. The doctor made my diagnosis based on the results of the tap. It showed a high protein count I think and I had symptoms of Sjogrens. I would feel better if Sjogrens would show up in the bloodwork though.
Posted 5/20/2015 4:55 AM (GMT 0)
Maggie, I totally feel your frustration, I been to 2 Nuerologist many test, Pain management, many ER visits and im on my 3rd Rheum and Finally my new Rheum sent me juxt recently fpor a Lip Biopsy and it's Positive Sjogrens.
I hope you get answers soon, Have you had a Lip Biopsy? If not, I think that should be your next route to take.

Keep us posted, Praying for you.
Warm regards, Diana
Posted 5/20/2015 1:24 PM (GMT 0)
The lip biopsy was a diagnosis for me. It's a conclusive test. Only about 50% of the people with SJS have positive blood work. If the biopsy is positive, you have it. I went to an ENT for mine and he did a very good job.
Something is going on if your sed rate is high and you have symptoms. I hope you get some answers soon.
Posted 5/26/2015 1:04 AM (GMT 0)
Hi, Maggie.
I'm new here but I'm in the same boat as you. My mother has lupus, but several tests have shown that most likely I do not have sjogrens or lupus. However, I have all the symptoms of sjogrens.

My next plan is to present all my symptoms and repeated research to a good rheumetologist who is willing to treat me with medication as though my bloodwork did show sjogrens. If the medication fixes my symptoms and I get my life back, then I think I can officially be in the Sjogrens clan even without the bloodwork. Hopefully, I can find that doctor. And I'm at such a desperate point that I'm willing to pay out of pocket to go to Mayo to get their take.

You know. whatever it takes to get your life back.
Posted 5/27/2015 5:30 AM (GMT 0)
It is possible to have symptoms and not have Sjogrens. My dental hygienist is the medical professional who suggested it and my online research mentioned dry eyes which I also have. I had positive blood tests. My older sister had some similar symptoms (althouh not as intense) and hers was determined to be due to age. I take Evoxac for dry mouth and have had tear ducts cauterized; eye drops are ok but usually splash cold water in eyes. Try to keep inflammation down with diet; never ingest "folic acid" but do take the natural form "folate." Stay away from prepared foods and eat whole foods. Plaquenil did not help me. I get my teeth cleaned every four months, use a prescription tooth paste and get a fluoride treatment as well. I am writing too much.
Posted 5/27/2015 5:48 AM (GMT 0)
PS: I am about ten years into Sjogrens as a primary disease and about five years ago started having neuropathy in my legs and feet; much suffering. Nine months ago started taking Gabapentin and has given me back my quality of life. It is by no means a cure and it doesn't take it all away but I can sleep.

My latest problem has been recurrent pneumonia and finally found Dr who listened to me--also told him about my trouble swallowing so I had a barium swallow test which showed aspiration into lungs. I have cervical esophageal webbing. Procedure tomorrow to fix. He is not sure if there is a causal connection with Sjogrens.

My goal is to keep trying to improve; these forums are a wonderful way to share and my best to all fellow suffers. We can learn from each other.

Post Edited (Barbara) : 5/26/2015 11:54:24 PM (GMT-6)

Posted 5/29/2015 5:39 PM (GMT 0)
Good luck with your procedure tomorrow Barbara!
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