1. < Autoimmune Diseases

Possible Sjogrens Disease

Posted by j77 @j77, Apr 3, 2024

I have had an undiagnosed illness for over 2 years.No Doctor can figure it out.I have many symptoms,but two major ones are extremely dry eyes that feel like sandpaper are squinty,lack muscle movement,blurry with floaters and can barely be in the sun.I also have muscle weakness all throughout my body especially my trunk of the body/pelvis and hips.I can barely walk.I have gained a ton of weight in the last year and my upper arms and legs are so big and inflamed.My upper arms remind me of how they were before I was diagnosed with Hashimito's Disease.It is not normal fat,but tons of inflammation.This was all brought on after an iron infusion/possibly covid.Does anyone with Sjogren's have extreme muscle weakness throughout the body?Even the muscles in the trunk to go to the bathroom are completely gone.Gastroparesis is not involved either.I was already checked for that.I went to the Eye Doctor and she performed a test to determine the dryness of my eye and I think it waa a 1.She had only see one other person with eyes as dry as mine.I have only had thyroid disease for years and I only take 50 mg of synthroid.I don't take any other Medication.We have alot of Lupus on both sides of the Family including my Mother.The Rheumatologists I have seen tell me that my symptoms are not being caused by an Autoimmune Disease.I have had a few positive ANA's with a high speckled pattern of 1.80,but I have had a few negative ANA's as well.I was very Healthy besides heavy periods from Anemia before this all came on.Any help would be appreciated.

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artemis1886 | @artemis1886 | Mar 21 12:40am

To be tested for Sjogrens
See an ENT have a biopsy of the glands it’s between the lip and teeth. They take four glands.
See eye doctor they do three test one is strips of a special toe paper = normal is above five and mine less that one percent. Then they ok at your corneas and mine were all scratched up. That led to a positive for Sjogrens. The rheumatologist looked in my mouth it was severely dry. He said yes you can definitely tell you have Sjogrens my mouth was so dry no matter how much water that I drink. I also have gastroparsis which the neurologist said that’s the first sign of neuropathy.

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carlybull1 | @carlybull1 | Mar 21 3:08am

Thank you!
Will request these tests be done.
Waiting on bloodwork now.

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Joanne Narna | @mothermary1 | Mar 22 3:09pm
In reply to @bruizersmom "For my constipation, specifically, I take one Linzess 290 mcg (prescription), 2 gelcaps of stool softener..." + (show)
@bruizersmom

For my constipation, specifically, I take one Linzess 290 mcg (prescription), 2 gelcaps of stool softener [Bisocodyl] (otc) and one extra-strength gas-X with breakfast. At lunch, I take one more stool softener. If I go for more than 5 days without a b.m., I force myself to have diarreah by taking 10 mg Colace (otc) with my other breakfast meds. This causes about 6 days of multiple but quick attacks of diarreah, but not enough to empty out. If it doesn't work, I up it to 1 Colace at Breakfast and 1 at bedtime. And I wear a pull-up, and put a pad on the mattress. Once I've suffered thru the 6 days, I drop the colace, and my body will switch back to my happy normal of 3 days constipation, 3 days diarreah, until everything stops up again. Don't give up! And your GI has, I hope, sent you for a Motility test???? Good luck.

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Thank you but I have done it all. I was scheduled twice for total colectomy but changed my mind. I’m 5 years in but it’s getting pretty bad now.

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badlaur | @badlaur | Mar 25 6:07pm

Check this out:
Blood tests can detect specific antibodies, such as anti-SSA (Ro) and anti-SSB (La), that are often present in people with Sjögren's.
1. Blood Tests:
Antibody Tests: Sjögren's syndrome is an autoimmune disease, meaning the body's immune system mistakenly attacks its own tissues. Blood tests can detect specific antibodies, such as anti-SSA (Ro) and anti-SSB (La), that are often present in people with Sjögren's.
Rheumatoid Factor: A test for rheumatoid factor (RF) is also used, as it can be elevated in people with Sjögren's.
Antinuclear Antibody (ANA) Test: An ANA test can help determine if you have an autoimmune disorder.
C-Reactive Protein (CRP): This test measures systemic inflammation.
Immunoglobulins: The immunoglobulin quantitation test measures the levels of the most common types of immunoglobulins in the blood, known as IgG, IgM, and IgA.
2. Eye Tests:
Schirmer's Test: This test measures the amount of tears produced by placing a small strip of paper under the lower eyelid to see how much moisture is absorbed over a period of time.
Ocular Staining: This test assesses damage to the ocular surface caused by eye dryness.
3. Salivary Gland Tests:
Salivary Gland Biopsy: A small piece of salivary gland tissue, usually from the lip, is removed and examined under a microscope to check for inflammation.
Salivary Gland Scintigraphy: This imaging scan checks the function of the salivary glands.
Salivary Gland Ultrasound: Ultrasound imaging can help determine if the salivary gland tissues are altered by inflammation.
Sialogram: This special X-ray can detect dye that's injected into the salivary glands in front of your ears to show how much saliva flows into your mouth.
Salivary Flow Rate Measurement: This test measures the amount of saliva produced in a certain period.
4. Other Tests:
Imaging Tests: In some cases, imaging tests like ultrasound or MRI of the salivary glands may be used.
Skin Biopsy: If a rash is present, a skin biopsy may be performed.
Sialometry: This test measures how much saliva you produce.

Dryness isn’t the only thing Sjogrens affects. Checkout Sjogrens.org for further details. Good luck! P.S. I gave Sjogrens !

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carlybull1 | @carlybull1 | 6 days ago
In reply to @celia16 "Some people get a lip biopsy to test for Sjogren’s. My rheumatologist didn’t think that was..." + (show)
@celia16

Some people get a lip biopsy to test for Sjogren’s. My rheumatologist didn’t think that was necessary and that I didn’t have it. I do have some symptoms and have been asked by multiple doctors if I have been tested for it. But, I trust my rheumatologist and now believe I do not have it.

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I had a lip biopsy tears back and it was neg.
I did get my bloodwork back this time and much of it was High!
Go back April 17th.
We shall see.

Thank you

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carlybull1 | @carlybull1 | 6 days ago
In reply to @artemis1886 "I had a biopsy from an ENT they take four glands out of your mouth. Second..." + (show)
@artemis1886

I had a biopsy from an ENT they take four glands out of your mouth.
Second test an eye doctor test for Sjogrens. Puts a piece of special paper in your eyes. Normal is above 5 mine was less than one. Second they look at your cornea and mine was all scatched up.
I was positive for Sjogrens.

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I also had a lip biopsy some years back which was negative.
Blood work just back and alot of it is HIGH!

Thank you

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