Please, only respond if you are SS-B positive

[iraisin]

If you are SS-B positive, please copy and paste the following list with your answers after each category in your reply.

are you positive ANA?:
Is your sed-rate elevated?:
What is your worst most disruptive symptom:
Are you diagnosed with another AI disease?:
Are you on disability? if so, at what age?:
List of your symptoms:

[iraisin]

are you positive ANA?: yes
Is your sed-rate elevated?:yes
What is your worst most disruptive symptom: GI tract & PNS (new)
Are you diagnosed with another AI disease?: no
Are you on disability? if so, at what age?: no
List of your symptoms:
fatigue
full-body dryness as well as eyes, mouth, sinuses
ear inflammation
GI: stomach ulcers and intestinal bleeding
arm tingling with ache and weak hands
leg tingling
numb feet (rare)
brain fog
sleep apnea
hair loss
(not listed in order of severity)

[Linda196]

are you positive ANA?: yes, >1:2560 speckled
Is your sed-rate elevated?:yes, +/_140 prior to TX, +/_ 40 on MTX, Pred & Plaq
What is your worst most disruptive symptom: fatigue
Are you diagnosed with another AI disease?:yes: sarcoid, dermatomylitis, RA, Hashimoto's, polytendinitis, costrochondritis
Are you on disability? if so, at what age?: yes, 53
List of your symptoms:dryness, fatigue, laryngeopharyngeal inflammation caused by GERD, generalized joint and muscle pain, muscle weakness, peripheral small fiber neuropathy, autonomic dysfunction, intermittant fever >40oC, rashes

[iraisin]

Linda,
Which of your numbers are higher? The SS-A or SS-B?

Thanks. And Thanks for responding to both.

[eija]

are you positive ANA?: Yes, last titer 5000

Is your sed-rate elevated?: Slightly

What is your worst most disruptive symptom: Fatigue and brain fog

Are you diagnosed with another AI disease?: Hypotyroidism

Are you on disability? if so, at what age?: No. Now, at 45, under the process of getting there.

List of your symptoms: Eye, mouth and skin dryness, joint and muscle pain in feet, toes, legs, shoulders, arms, hands, fingers... fatigue, brain fog, migraine, vision problems, numbing hands, cognitive problems, ear aches coming and going, rib cage pain, lower back pain etc. But hard to say what's because of SS and what's something else. For most things my rheumy says "that's not bc of SS". 

[Linda196]

The lab here provides a general negative/equivocal/positive range, and my SSa was >25, SSb >4, which is the positive result for each.

[SueAnn]

are you positive ANA?:  At first yes, now no
Is your sed-rate elevated?: no
What is your worst most disruptive symptom: Joint and body pain, fatigue
Are you diagnosed with another AI disease?: No
Are you on disability? if so, at what age?: No currently working full time
List of your symptoms  Joint pain, PN, dry eyes, dry mouth, dry skin, brain fog, fatigue, Dizziness.

[MaryBee7]

are you positive ANA?:  Yes

Is your sed-rate elevated?:  No

What is your worst most disruptive symptom:  F.A.T.I.G.U.E and now pressure behind eyes (really bad)

Are you diagnosed with another AI disease?:  No
Are you on disability? if so, at what age?:  Not yet
List of your symptoms:  fatigue, GERD, neuropathy (legs/arms/hands), joint pain, cognitive issues worsening such as brain fog and speech, dry eyes/throat/skin, muscle weakness in legs, digestive (IBS?), blepharitis, pressure behind eyes (very hard to describe, it comes and goes, when it comes I have to "shut down")

[Friedbrain]

are you positive ANA?: sporadically over the past 25ys; speckled
Is your sed-rate elevated?: no, exact opposite.  Like 2, which some sites say is abnormal. (C3 and C4 complement factors are sig low, though)
What is your worst most disruptive symptom: dizziness and all-over body shaking that has lasted for hours (prob not SJS but don't know reason); SJS related I would say is the returned extreme feverish/achy feelings.  Gah!
Are you diagnosed with another AI disease?: Hashimoto's hypothyroidism (+TPO); anti-cardiolipin IgG Abs in past (so APS at one point)
Are you on disability? if so, at what age?: no
List of your symptoms: 
-seizures (from unknown cause)
-incredible dizziness that can lead to all-over body shaking that lasts for hours (unknown, maybe dysautonomia)
-dry eyes, mouth
-a host of CNS and PNS problems that come and go and are VERY disruptive because they're unpredictable (reason they first thought it was MS 10 ys ago, but match up nicely with others here, so maybe they are related to SJS!) including: difficulty swallowing, moving eyes (via defects with several cranial nerves), loss of balance, trouble with both bladder function and sensation (first time I've noticed a problem with sensation), a generalized brain fog and two episodes of significant confusion (I'm in my mid-40s, so not right!) (and during brief episodes that are intense, I even have difficulty with random stuff like moving my tongue)
-fatigue (but I also have adrenal insufficiency and respond poorly to simple carbs, so between the two of them, that could explain it)
-tingly fingers (cold, mental/physiological stressors even including eating)
-also, joint pain that comes and goes but is worse with accompanying feeling of feverishness/achiness. 
-I also have abnormally low WBC (neutropenia) and RBC, which the docs think are due to "disease state".

It sounds crazy which is why it's hard to get a doc to help me.  Even with this bladder thing, my ability to empty it changes on an hourly basis, and I lost sensation in the middle of this "episode" (which has lasted for over a week), which doesn't make sense to me at all.

[Lesley_x]

are you positive ANA?: Yes
Is your sed-rate elevated?: Yes
What is your worst most disruptive symptom: Difficulty and pain on swallowing
Are you diagnosed with another AI disease?: Have inflammatory bowel disease, not sure which yet
Are you on disability? if so, at what age?: No
List of your symptoms:
Dry eyes, dry mouth, pain and difficulty swallowing, joint pain, ocular migraines, fatigue
Most of my symptoms are related to bowel disease, my sjogrens pales in comparison to the issues I have with that!!

[Cheryl]

are you positive ANA?: yes
Is your sed-rate elevated?:no
What is your worst most disruptive symptom: Usually eye pain & light sensitivity is worst
Are you diagnosed with another AI disease?: Graves in remission, fibromyalgia, lymphoma in remission
Are you on disability? No, I took early retirement instead at age 55. if so, at what age?:
List of your symptoms: Eyes, headaches, GERD, fatigue, osteoarth., muscle pain, no moisture, mild neuropathy, earaches, dental issues, costochondritis, tmj, bursitis, brain fog