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Questionnaire on Sjogren's Syndrome Part 1

The survey is now closed. Thank you for your participation.

418 answers (378 locked)
Yes
35 votes
87.5%
No
0 votes
0%
In the process of getting a diagnosis
5 votes
12.5%
418 answers (378 locked)
in my 40s
13 votes
32.5%
in my 30s
7 votes
17.5%
in my 50s
9 votes
22.5%
in my twenties
5 votes
12.5%
in my teenage years or earlier
4 votes
10.0%
In my 60s
1 vote
2.5%
In my 70s or later
1 vote
2.5%
418 answers - 2,097 votes (1,909 locked)
Dryness of mouth and eyes
23 votes
5.5%
Fatigue and/or brain fog
22 votes
5.3%
Unexplained inflammation or arthritic pain
20 votes
4.8%
Food frequently getting caught in throat
12 votes
2.9%
Light sensitivity
9 votes
2.2%
I had test results that came back high for ANA without a good explanation, so I/the doctor pursued further testing.
9 votes
2.2%
Unexplained rashes or recurring infections
10 votes
2.4%
Nerve pain in the feet
11 votes
2.6%
Generalized nerve pain everywhere
9 votes
2.2%
Nerve pain in the hands
7 votes
1.7%
5 votes
1.2%

Mother has Lupus and Sjogrens

Raynauds

Swollen glands

Hashimoto's

lymphadenopathy

Unexplained recurring cough
6 votes
1.4%
I have a condition that is often found alongside Sjogren's Syndrome
4 votes
1.0%
Sound sensitivity
4 votes
1.0%
Itching
6 votes
1.4%
I have Rheumatoid Arthritis
7 votes
1.7%
Painful intercourse
1 vote
0.2%
Difficulty speaking
5 votes
1.2%
Organ involvement such as kidney, liver, lung or heart issues
3 votes
0.7%
Multi chemical sensitivities
4 votes
1.0%
My Opthatmologist/optometrist recommended it.
3 votes
0.7%
I have Lupus
1 vote
0.2%
My Dentist recommended that I get tested
2 votes
0.5%
Yeast overgrowth
1 vote
0.2%
Family member has Sjogren's Syndrome
1 vote
0.2%
I have a liver disease such as Primary Biliary Cirrhosis/Cholangitis, or Autoimmune Hepatitis
0 votes
0%
The doctors were looking for Multiple Sclerosis and decided to rule out Sjogren's Syndrome
1 vote
0.2%
Frequent miscarriages
0 votes
0%
I have Schleroderma
1 vote
0.2%
I was diagnosed with a from of cancer that led to these tests
0 votes
0%
A friend told me to get checked.
1 vote
0.2%
My Gynaecologist recommended it.
0 votes
0%
418 answers (378 locked)
Female
24 votes
60.0%
Male
16 votes
40.0%
Transgender male
0 votes
0%
Transgender female
0 votes
0%
Nonbinary
0 votes
0%
Other
0 votes
0%
I choose not to answer this
0 votes
0%
418 answers - 426 votes (386 locked)
Yes
15 votes
3.6%
No
20 votes
4.8%
There were no incorrect diagnoses, just a lot of disorders ruled out until the right diagnosis was made.
5 votes
1.2%
418 answers (378 locked)
under 1 year
15 votes
37.5%
1-2 years
5 votes
12.5%
5-6 years
6 votes
15.0%
2-3 years
3 votes
7.5%
3-4 years
2 votes
5.0%
8-10 years
4 votes
10.0%
10-15 years
1 vote
2.5%
15-20 years
1 vote
2.5%
6-7 years
2 votes
5.0%
20-30 years
1 vote
2.5%
greater than 30 years.
0 votes
0%
418 answers - 1,534 votes (1,363 locked)
Test for elevated ANA (AntiNuclear Antibody)
21 votes
5.0%
Test for SSA/Ro antibodies
22 votes
5.3%
Test for SSB/La antibodies
18 votes
4.3%
Test for RF (Rheumatoid Factor)
12 votes
2.9%
Schirmer test
10 votes
2.4%
ESR (Erythrocyte Sedimentation Rate)
9 votes
2.2%
IGs (Immunoglobulins)
8 votes
1.9%
6 votes
1.4%

Biopsy of the rash on my legs

Not diagnosed yet

Waiting on testing

symptomatically as everyone shoudl be as the markers you mention above are useless ! 90% men and 40% women NEVER show them but do have SS

Liver testing

Labial gland (lip) biopsy
9 votes
2.2%
Accompanying diagnosis of Raynaud's Phenomenon
5 votes
1.2%
Nerve conduction tests
7 votes
1.7%
Accompanying diagnosis of Rheumatoid Arthiritis
3 votes
0.7%
MRI of brain and spinal cord
5 votes
1.2%
Extractable Nuclear Antigen Panel
4 votes
1.0%
Liver panel test
2 votes
0.5%
Accompanying diagnosis of Lupus
0 votes
0%
Rose Bengal dye test
4 votes
1.0%
Skin biopsy test for Small Fiber Neuropathy
5 votes
1.2%
Lissamine green dye test
3 votes
0.7%
Slit lamp test
1 vote
0.2%
Saliva scan
2 votes
0.5%
Cat scan of brain
2 votes
0.5%
"Spit" Cup test
3 votes
0.7%
Autoantibodies to Salivary Gland Protein-1
1 vote
0.2%
Cutaneous nerve/skin biopsy
3 votes
0.7%
Sialometry
3 votes
0.7%
Lumbar puncture
1 vote
0.2%
Parotid Secretory Protein
0 votes
0%
Carbonic anhydrase VI
0 votes
0%
Parotid Scintigraphy
0 votes
0%
Autonomic testing
2 votes
0.5%
Accompanying diagnosis of schleroderma
0 votes
0%
Accompanying diagnosis of Primary Biliary Chongalitis or Autoimmune Hepatitis
0 votes
0%
Accompanying lung disease
0 votes
0%
Accompanying Kidney disease
0 votes
0%
Accompanying Lymphoma
0 votes
0%
Accompanying diagnosis of Myelitis
0 votes
0%
418 answers (378 locked)
Yes
8 votes
20.0%
No
24 votes
60.0%
Yes, but I do have unrelated mental health issues.
7 votes
17.5%
I choose not to answer this.
1 vote
2.5%
418 answers - 528 votes (473 locked)
No
0 votes
0%
By Family
11 votes
2.6%
By medical professionals or their staff
14 votes
3.3%
I choose not to answer this.
19 votes
4.5%
By Friends
9 votes
2.2%
By Spouse
2 votes
0.5%
418 answers - 4,937 votes (4,472 locked)
Fatigue
34 votes
8.1%
"Brain Fog" or Cognitive problems
28 votes
6.7%
Dry throat
27 votes
6.5%
Dry nose
27 votes
6.5%
Sleep disurbances
18 votes
4.3%
Hoarse voice
18 votes
4.3%
Dryness with the vagina
10 votes
2.4%
Arthralgia (inflammation causing arthritis like pain)
17 votes
4.1%
Raynaud's Phenomenon
17 votes
4.1%
Dry ears
15 votes
3.6%
Fibromylagia
16 votes
3.8%
Blurry or double vision
13 votes
3.1%
Swollen Parotids
12 votes
2.9%
Rashes, spiderweb veins and red spots on the body
9 votes
2.2%
Food sensitivities
10 votes
2.4%
Trouble speaking
15 votes
3.6%
Dehydration
8 votes
1.9%
Peripheral Neuropathy
17 votes
4.1%
Allergies
9 votes
2.2%
Thyroid dysfuntion
8 votes
1.9%
Confusion
6 votes
1.4%
Scent or chemical sensitivities
7 votes
1.7%
Low blood pressure
5 votes
1.2%
High blood pressure
9 votes
2.2%
Hearing issues
9 votes
2.2%
Executive Dysfunction (inability to get it together or to plan or organize things.
8 votes
1.9%
Problems breathing
6 votes
1.4%
Motility issues (using the bathroom: too slow or too fast)
3 votes
0.7%
Diminished sense of smell
5 votes
1.2%
Diminished sense of taste
5 votes
1.2%
Small Fiber Neuropathy
11 votes
2.6%
Blepharitis
10 votes
2.4%
Syncope or presyncope: Passing out or almost Passing out
5 votes
1.2%
Metabolic issues
1 vote
0.2%
Female sexual dysfunction
3 votes
0.7%
Low estrogen levels
5 votes
1.2%
Candida
3 votes
0.7%
3 votes
0.7%

Mucus in throat

Gut issues

interstitial cystitis , urethritis , interstitial pneumonitis

Dysautonomia
5 votes
1.2%
Salivary stones
2 votes
0.5%
Fungal infections
2 votes
0.5%
Miscarriage
1 vote
0.2%
Vasculitis
4 votes
1.0%
Inability to process fats
2 votes
0.5%
Female infertility
0 votes
0%
Liver disease
2 votes
0.5%
Low testosterone
4 votes
1.0%
Meibomian gland dysfunction
5 votes
1.2%
Kidney disease
0 votes
0%
Shrunken salivary ducts
1 vote
0.2%
Myeopthaty
0 votes
0%
Dryness with the scrotum or scrotal sack area?
2 votes
0.5%
Lymphoma
0 votes
0%
Male sexual dysfunction
3 votes
0.7%
Low androgens
0 votes
0%
Male infertility
0 votes
0%
418 answers (378 locked)
Yes
12 votes
30.0%
No
28 votes
70.0%
I choose not to answer
0 votes
0%
418 answers (378 locked)
Yes
12 votes
30.0%
No
28 votes
70.0%
416 answers (377 locked)
Yes
32 votes
82.1%
No
7 votes
17.9%
417 answers (377 locked)
Yes
37 votes
92.5%
No
3 votes
7.5%
412 answers (374 locked)
No
38 votes
100%
Yes
0 votes
0%
Yes, multiple times
0 votes
0%
I choose not to answer this.
0 votes
0%
408 answers (369 locked)
Yes
10 votes
25.6%
No
20 votes
51.3%
In the process of finding out
9 votes
23.1%