Transcripts
February 20, 2000
Sjögren's Syndrome -The Diagnosis
<Guest1> you are in the right place Guest2
<Guest1> Hi Care!
<Guest2> Looking for Sogren's Chat room at 7:00 eastern
<Guest1> you have the right place Guest2!
<CareOP> didn't put my popus in yet! hang on!!
<CareOP> :o]
<Guest2> Great -- this is my first time on.
<Guest1> wow, you are doing great!
<Guest2> Have you done this chat room before
<Guest1> you look like a pro
<Guest1> yes
<Guest2> How many people usually log on
<CareOP> hi Guest2!
<Guest1> I also go to MSWorld frequently.
<CareOP> Guest2 where you from?
<Guest2> Someone in #MSWord was looking for MS chat
<Guest2> How about u
<CareOP> good! Do you have Sjogren's Guest2?
<Guest2> Yes -- primary, and fibro
<Guest2> how about u
<CareOP> Hi Guest!
<CareOP> me too
<Guest1> I have MS
<CareOP> Guest where R U from?
<Guest1> but I might have Sjogrens also
<CareOP> Hi Spring!
<Guest1> Hi Spring!
<SpringOP> hi, had a bit of delay connecting
<Guest1> Hi! I can't stay tonight but I wanted to stop in and wish you guys a "Happy Chat!"
<CareOP> oops wrong topic sorry!
<Guest2> How long have you had it -- and how has it advanced
<Guest2> I was tested for MS before SS was dx
<CareOP> EEKS!
<CareOP> me too Guest2 bet we all have!
<SpringOP> thanks Guest1!
<Guest1> I'll see you folks later!
<Guest2> Hi spring
<Guest2> That's the biggest problem with SS -- no one can see it
<SpringOP> yep, me 3
<CareOP> Tonight's Topic is "SJÖGREN'S SYNDROME - THE DIAGNOSIS" Remember your personal concerns will always come first.
<CareOP> how old are you Guest2?Hope U don't mind my asking??? :o]
<Guest3> Hi everyone
<CareOP> yes the hidden symptoms are difficult for people to understand
<CareOP> Hi Srch
<CareOP> long name!
<Guest3> I know!
<CareOP> ha!
<CareOP> I'll call ya Guest5
<Guest3> sounds good
<CareOP> looking for something Guest3? lol
<Guest3> YES!
<CareOP> do you have Sjogrens Guest3?
<CareOP> ha!
<CareOP> wgat u looking for?
<Guest3> yes i do...dx sept 99
<Guest3> i'm looking for love and good health!
<CareOP> wow new! what are your symptoms?
<CareOP> me too!
<Guest3> fatigue, DRYNESS,pain-incredible...
<CareOP> some love for you!
<Guest3> thanks
<CareOP> PAIN!!!
<Guest3> pain pain pain
<CareOP> yes my major problem! describe your pain please?
<CareOP> what happened to Guest2?
<Guest3> deep down buring bone pain. but muscle pain too...joint pain
<CareOP> yes - back pain BUTT pain! Burning bad pain!
<CareOP> Spring what are all the pings?
<SpringOP> I have no idea! i got the boot
<SpringOP> don't know, unless someone is doing them
<Guest3> please don't boot me!
<CareOP> yes it said Ping time out???
<SpringOP> I see you I
<CareOP> I is back! Hi I!
<CareOP> Scrchin - is your pain constant - worsens as the day progresses?
<SpringOP> well, what were we talking about?
<SpringOP> oh yeah, pain
<CareOP> PAIN!
<CareOP> ugh!
<SpringOP> a warming cyber-handshake to I !
<CareOP> I do you have pain?
<Guest3> yes, constant...and some days it worsens, other days it just stays the same
<Guest4> Am I back on
<SpringOP> yes you are back on, Guest4
<CareOP> me too Guest5 - what drugs do you take for the pain?
<Guest4> This is Guest2 -- and I got booted
<CareOP> Hi "I"! :o]
<Guest3> I started epidural's...they help some...otherwise i take Neurontin, Darvocet
<SpringOP> oh, hi again Guest2. I suppose you typed something beginning with I and hence your new name
<CareOP> yep strange happenings here tonight - sorry Folks!
<CareOP> this booting does not happen often - very sorry!
<Guest4> Don't know what I did, so now I'm "Guest4"
<SpringOP> I get the pain when I have been on my feet allot in one day. then they ache inside like the flu. the feet are the worse.
<CareOP> you can change your name again Guest4
<CareOP> :o]
<SpringOP> there ya are Guest2
<CareOP> got it!
<Guest2> thanks
<Guest2> got it
<CareOP> Neurontin for me too!
<CareOP> lots of it!
<Guest3> does it help you?
<Guest3> how much?
<Guest2> Would love to know how you deal with telling people aboutSS
<CareOP> and Pamelor and prednisone too
<SpringOP> did it takes years to get a positive diagnosis everyone?
<CareOP> it's difficult Guest2
<Guest3> i have been sick since '88
<CareOP> no one believes how bad you feel - but "look so good"!
<Guest3> i hate hearing that! (look so good)
<CareOP> I read that SjS can start in childhood and slowly progress
<CareOP> me too!
<CareOP> ha!
<Guest2> That's the problem. I can't work full time but when I tell my in-laws they think I'm lazy I think
<CareOP> The in-laws give me "looks" - she's lazy and neurotic!
<SpringOP> if you do not look sic, why would you tell anyone? Do you find yourself explaining your "shortcomings" created by this?
<Guest2> They don't see how tired I get
<CareOP> yep!
<Guest2> ys
<CareOP> yes - because people expect you to do more
<Guest2> I try to sound upbeat so that I'm not whining but then it doesn't sound serious
<CareOP> me too Guest2 - and the pain really slows me down
<SpringOP> that is true Guest2
<CareOP> yes - people can't ubderstand - can't "see" what we feel
<CareOP> I tend to moan a lot cause I always hurt! lol!
<Guest2> I'm not nearly as bad as some, but there is "always Something' as Gilda Radna ussed to say
<CareOP> brain Guest2 too?
<Guest2> Yes, ys
<CareOP> I take 2,1000mg Neurontin Guest3
<Guest2> If I don't get a good night's sleep no point in going to work
<CareOP> what do u do Guest2?
<SpringOP> I went to an all day art class Friday, and by 2 pm I was reaaly beat, could hardly feel like standing up. When I said that I was beat, they said, oh yeah, just wait till you get to our age (they are 60-70 and I am 48)
<CareOP> does anyone's butt hurt all the time?
<CareOP> mine does! :o[
<Guest3> i went to church today and barely made it home
<Guest3> so hard to drive
<CareOP> yes!
<Guest2> Spring -- I feel bad that I'm like this now and I have a mother in law who is 91 and goes like crazy
<CareOP> driving is a big problem for me!
* Guest3 smiles at everyone in the room :-)
<Guest3> my butt is fine!!!
<SpringOP> my butt's fine careop
<CareOP> my mom is 76 and can out "go" me any day!
<Guest3> how do you deal with it OP?
* CareOP has a very BAD BUTT!
<CareOP> :o[
<CareOP> Guest3 who you asking darlin? :o]
<SpringOP> yes Guest2, it is disgusting, and it seems no point in trying to explain
<CareOP> I know - that's really why we need support groups
<Guest3> huh? how do you deal with not driving very well?
<Guest2> That's why I think they think I'm fakin'
<SpringOP> do any of you have a local Sjogren's support group?
<Guest3> no
<CareOP> the fatigue is a problem - then cognitive Brain Guest2 too
<Guest2> No
<Guest3> i don't think so
<Guest3> cognitive stuff is hard to deal with
<Guest2> Would start one but have to do some research I guess
<CareOP> I drive and pray I don't end up in an accident!
<Guest3> i hear you there
<CareOP> you too Guest3?
<Guest2> How far can you drive Op before you get too tired
<Guest3> yes
<SpringOP> you're not Guest2, I believe you!
<Guest2> Thank you OP
<CareOP> I really have had some close calls driving - I just don't see things!
<Guest2> Is that because of vision, or lack of concentration due to brain Guest2
<Guest3> that is what i was wondering too
<CareOP> attentionproblems for me - brain does not register things I see
<CareOP> concentration
<Guest3> until it is almost too late
<Guest2> That's scary.......
<CareOP> tested I have 0 attention span
<SpringOP> My hubby has been doing all the long driving for so long now, I have no idea how far I could go. when I drive on a trip and get tired, I just tell him his turn
<Guest2> I'm just a very tense driver and get worn out I think becausse of that
<CareOP> how about you Guest3? driving?
<Guest3> i wish i had someone to help me with driving
<Guest3> not much driving here!
<CareOP> is it attention Guest3?
<Guest3> attention and vision
<CareOP> Hi Guest5!
<CareOP> how bad is your vision?
<Guest2> When I go up and down 95 (East coast) have to consentrate so much -- when I get there I'm dead
<Guest3> i guess it depends...but i am constantly needing new glasses
<Guest5> hi
<SpringOP> hi Guest5! welcome to Sjogren's chat
<CareOP> my vision is not too bad yet - gets blurry have had a little optic neuritis also
<Guest3> All the doctoring with Sjogren's is tough.
<Guest3> Sometimes i wish life was just a bit more "normal"!
<CareOP> ekks - yes too many doctors!
<CareOP> I say 13 before I was diagnosed!
<CareOP> me too
<Guest2> Srch -- yes, I would love it
<Guest3> do you have MS?
<CareOP> I have Sjogren's with a possible MS overlapp according to the Clevlend Clinic
<SpringOP> my definition of normal has sure changed
<Guest3> I sonetimes wonder about MS for mee too
<Guest5> no I have MG but also concerned about posibly having SjS
<Guest2> Neuro thought I had MS -- did all the testing but neg
<CareOP> do u all have central nervous system problems?
<Guest3> what is MG?
<Guest3> My testing was neg too.
<CareOP> Multiple Sclerosis
<Guest5> myasthenia gravis
<Guest3> But Sjogren's didn't show up right away either
<CareOP> oh yes can mimic that also MG
<Guest2> My ignorance-- what is myasthenia gravis
<CareOP> me either - took years!
<Guest3> i think i have CNS symptoms
<CareOP> a neurlogical illness muscular problems
<CareOP> Ari Onasis had it
<CareOP> MRI Guest3?
<Guest3> how do they find MG?
<Guest2> What are symptoms
<Guest3> Yes careop
<Guest5> MG is an autoimmune nueromuscular disease
<CareOP> what did it show Guest3?
<CareOP> yes correct
<CareOP> EMG migh detect MG
<Guest5> with me a positive blood test I got lucky
<Guest3> nothing...except my brain is there i guess! Although i wonder at times!
<CareOP> I had positive ANA and RF
<CareOP> me too Guest3! ha!
<Guest3> I have pos SS-A and SS-B
<Guest3> :)
<CareOP> what tests were positive Guest5?
<CareOP> not me
<CareOP> just ANA
<Guest3> EMG...is that the needle in muscle test?
<CareOP> how high was your ANA Guest3?
<CareOP> yes needles in muscle
<Guest5> acticoline receptor antibody test
<Guest3> I don't remember -
<CareOP> those are always fun
<CareOP> what is that Guest5?
<Guest3> I just had one of those-EMG i mean
<CareOP> positive Schmir (sp)tests?
<CareOP> eye dryness test?
<Guest3> I never had one of those tests
<Guest3> did you care?
<Guest2> What was your scor CareOP
<Guest5> it is a blood test they do to check for MG
<CareOP> I passed the first eye test, 4 years later - no tears!
<CareOP> oh thanks -
<SpringOP> we sure have benn poked and prodded, with a variety of devices
<Guest3> that is true
<Guest3> and it sucks at tiems
<CareOP> sure have! one lovely spinal tap too! eeks!
<Guest2> My schirm was 8 --
<CareOP> is that passing Guest2?
<Guest3> i had a spinal when i started migraines
<Guest3> ouch
<Guest2> Yikes - I had spinal too - not fun
<Guest5> oh yeah I had almost every test you can think of
<Guest3> but now i am used to it with the epidurals
<Guest2> Guest3 - what do you do for migrains -- I get zillions
<CareOP> yes - not fun then they took a quart of blood right after the spinal!
<SpringOP> what is the shirmers test range? I have not had one
<CareOP> me too Guest5!
<Guest3> i am on imitrex for migraines
<Guest3> the shots
<Guest2> Same here -- how many do you take in a month
<CareOP> less than 5 mm is flunking in a 5 minute test - I think
<Guest3> about 4
<Guest3> does that test hurt?
<CareOP> flunked
<CareOP> no
<CareOP> not at all
<Guest2> Schirmer - No doesnt hurt
<Guest3> I still need to find a decent eye doc
<CareOP> just put little papers in "number" eyes
<Guest3> and a decent neuro
<SpringOP> I have been using the imitrex tabs, the shot if real bad and not fixed with tab. but now I am trying Maxalt, it is somehow related
<CareOP> ]what are your headaches like?
<Guest2> I've tried Maxal too -
<Guest5> I have a problem with the sjs test because I have to take water pills because of some of my meds so it mess up the eyes test.. the blood test was negitive I don't know what else to do
<Guest2> Mine are all on left side and I get about 6-9 a month
<Guest3> nauseating and double vision and can't tolerate light
<Guest3> mine are left side too
<SpringOP> my migraines last for several days at a time now, are anyone else's like that>?
<Guest2> Yes, nausea, dizzy, sparkles=sometimes
<Guest3> 3 days usually
<CareOP> well with some all the blood tests are negative
<CareOP> some of us produce antibodies to nerve cells
<CareOP> no test for that yet
<Guest2> Mine last for about 3 days -- I take Imitrex for the three days
<Guest3> what does that mean careop?
<Guest5> I can't get off the lasix either we've tryed
<Guest3> antibodies to nerve cells
<SpringOP> left here too, 80 % of time
<CareOP> I have had the sparklers in the eyes
<Guest3> I have that when i cough
<CareOP> it means that our bodies attack nerve cells
<Guest3> light sparklers i mean!
<CareOP> I have a purely sensory neuropathy
<SpringOP> me too Guest2, days of imitrex, now they only last 3 days, used to be 7
<CareOP> gangilionitis
<Guest2> In fact, everything I get is on left side of head and body
<CareOP> my left side is the worse also!
<Guest3> purely sensory neuropathy? i feel dumb-what is that
<CareOP> stroke like symptoms sometimes
<SpringOP> I thought SjS was equal sided usually
<CareOP> it means muscles are not invloved
<Guest2> I have fribromyalgia too Spring and I thing they are part of that too
<CareOP> it is difficult to diagnose a sensory neuropathy
<Guest3> my right side is really bad-right foot drop-right arm doesn't work much
<CareOP> me tto Guest2
<Guest3> how do they dx it CareOP?
<CareOP> anyone have spinal surgery?
<Guest3> not me
<CareOP> clinical symptoms
<Guest5> what other tests can they do beside the blood and eye test?
<Guest2> Can anyone distinguish between symptsom of SS and Fibro
<CareOP> a good neuro diagnosed me
<CareOP> fibro has the tender muscles "spots"
<Guest3> My neuro just dx'd me with RSD, but i think it is Sjogren's
<CareOP> that one can be confused also
<Guest3> RSD?
<CareOP> I have had burning red spots before - not since on prednisone
<SpringOP> my blood tests were negative. but my rheumatologist said with the symptoms and what she observed herself, and other records, she is positive I have SjS
<Guest2> But not just "spots" many other things too
<CareOP> gee don't remember the name!
<CareOP> like what Guest2?
<Guest3> I read pos ss-a and ss-b could be lupus too
<SpringOP> Guest5, what is RHD
<SpringOP> RSD
<CareOP> yes Spring - many are diagnoed that way - plus a MRI showing whit spots
<Guest2> sleep is a big factor, aching muscles
<Guest3> RSD-Reflex symphatec Dystrophy
<Guest3> sympathetic-sorry!
<CareOP> right Guest3!
<CareOP> hey spellen dont count!
<SpringOP> learn something new every day
<Guest2> Hey -- who had white spots. That's what neuro found on me but didn't know what it was
<CareOP> me whate matter lesions in brain SpringOP too
<SpringOP> he found white spots on you? or in your eyes?
<CareOP> white sorry!
<Guest2> MRI showed white spots
<CareOP> on an MRI Guest2?
<Guest2> On brain
<SpringOP> in your brain?
<CareOP> yep - how many and where were they Guest2?
<CareOP> called "white matter lesions"
<SpringOP> oh, yes, I seem to be housing 2 premanent ones and a couple of part timers. (white spots)
<CareOP> lol Spring!
<Guest3> Have you ever had a normal MRI-no spots?
<CareOP> no
<Guest2> I'm not sure but ENT had me do MRI cause he thought I had brain tumor that's when spots showed up
<CareOP> you can have them in your spinal chord also
<Guest3> white spots?
<CareOP> U can have spots and they mean nothing - more common in people over 50
<SpringOP> same here Guest2, MRI after a CAT scan looked like a brain tumor, but that is a different thing. But the white lesions did show up and hence the possible MS
<Guest2> I remember watching a show on T V and they said that white spots on brain were blue print for MS
<CareOP> not always
* SpringOP thinks if they brain scanned every person on the earth, the definitions might change
<CareOP> my neuro said they look exactly alike in MS and Sjogrens
<Guest3> :)
<Guest2> I agree Spring
<CareOP> yep true!
<SpringOP> they can be many things, including Migraine infarcts, but I believe they look a bit diefferent
<CareOP> UBO's is what the "unidentified" spots are called
<SpringOP> my rheumy said that lupus brain lesions look different from others
<CareOP> Spring - Neuro said SjS and MS lesions look alike on MRI
<Guest3> do any of you have lupus too?
<Guest5> 5 yrs ago when I had my mri 1 lesion on my brain and a cyst on my spinal colum they told me no problemmmm
<SpringOP> my rheumy just said that my lesions were NOT lupus. that they would look diffferent
<CareOP> yes because they are a "vasculitis"
<Guest2> Neither my neuro or rheumy have said having white spots is a problem
<CareOP> do you have central nervous symptoms Guest2?
<SpringOP> weeeeeeeeeeeelllllllll, the bottom line in my opinioin, is..how do you feel and how do you deal with that.
<Guest2> what would they be?
<Guest5> ]my thoughts were how can it be no problem?
<SpringOP> oh, I see Guest5
<CareOP> cognitive problems - confusion trouble walking dizziness to mention a few - or no symptoms at all
<SpringOP> hi Guest6 good to see you
<Guest6> Hi
<Guest2> I feel as though I'm always confused
<CareOP> me too Guest2! I am! ha!
<Guest6> This is my first chat
<Guest2> Is anyone going through menopause??? Some symptoms are so similar
<CareOP> Welcome!
* SpringOP Guest2s up when it is hot or I am real tired. there was near zero visibility here last night
<CareOP> hysterectomy
<Guest6> same here
<Guest5> does anyone here here have to take water pills for other health concerns?
<CareOP> no not yet Guest2
<CareOP> How U doing Guest6?
<SpringOP> even if you had a hysterectomy, if you still have the ovaries, you will still go through menopause
<Guest2> I read a book I think it's called "Passages" or something like that --- mentioned so many similarities
<SpringOP> I have that book, it is a great book on menopause
<CareOP> I take estrace
<Guest2> Like sleep problems, brain Guest2, etc
<Guest6> I was treated for early menopause when it was actually Sjogrens
<SpringOP> right, so you have complicating symptoms, hehehe.
<CareOP> I had spinal surgery and a hysterectome at the beginning of this illness - misdiagnosed! didn't need either!
<SpringOP> sounds like me Guest6
<CareOP> what were your symptoms Guest6?
<SpringOP> well, i needed the hysterectomy.
<Guest6> After I had a hysterectomy and ovaries out, that is when Sjogrens was diagnosed
<CareOP> it wasn't so bad - had a uterine prolapse anyway
<CareOP> Guest6 seems it's more the time perios when SjS huts full force!
<Guest6> peripheral neuropathy, chronic GI problem, bleeding,etc
<Guest2> I'm 53 and just 'missed' my first month...........have 11 mor to go , right?
<CareOP> sorry stupid keys sticking!
<CareOP> probably Guest2
<CareOP> are we all about the same age here? me 52
<Guest6> I am still not convinced it isn't a hormonal problem that causes Sjogrens
<SpringOP> well, I read that it is common to diagnose SjS about the time some are beginning to go through that. so...
<Guest2> I agree
<CareOP> I don't think so Spring
<CareOP> :o]
<SpringOP> lol Guest2
<CareOP> ifthat were true hormones would cure it!
<SpringOP> maybe I phrased that wrong careop, but it was what I read. if I find out where I will let you know
<Guest2> I guess you're right -- I guess it's because of the age thing
<SpringOP> I am F, 48, married with 2 grown sons, first grandchild due this summer.
<Guest2> Bet your excited Spring
<Guest6> It started to bother me during infertility treatments with hormones many years ago
<CareOP> really Guest6?
<SpringOP> yep, I sure am!
<CareOP> any of you have a miscrriage?
<Guest6> It is hard to distinguish between the two, but neuropathy isn't exactly menopause
<CareOP> oops lost Guest3!
<Guest2> No miscarriage here
<CareOP> right Guest6!
<SpringOP> nope.
<Guest6> did any one get skin lesions
<CareOP> neyropathy is really the pits!
<Guest2> Not me
<CareOP> what kind Guest6?
<CareOP> I have Roschea
<CareOP> spelling?
<Guest6> Everywhere like small blisters, red
<Guest2> What does it look like CareOp
* SpringOP has shoulder/chest/neck rash
<CareOP> in my mouth sometimes Guest6
<SpringOP> I have tiny red things like that.
<CareOP> blood blisters
<Guest6> Not in the mouth
<SpringOP> and they seem to grow.
<Guest6> sortof -
<CareOP> sounds like vasculitis to me
<Guest6> How do you treat them?
<Guest6> It is not like I would expect vasculitis to look
<Guest3> i got lost-hi again!
<Guest2> Thought we'd lost you srch
<SpringOP> but they are flat. so I do not think they mean anything in my case. at least the rheumy did not say. Actually she did not give me details, just that she was sure I have it. so who knows what she saw
<CareOP> what do they look like Guest6? spider web type stuff?
<Guest3> What does Vasculitis look like
<Guest2> Does anyone have fluid like sensation in ear and tinnitus
<CareOP> like little red bumps
<Guest3> yes i do Guest2!
<CareOP> oh yes Guest2 I do! all the time!
<Guest6> no, more like small blisters with a white center that sometimes heal on the top
<Guest3> are the bumps raised?
<CareOP> gee Guest6 - don't know what that would be
<Guest2> It drives me crazy when I get it......CareOP....sometimes I have to hang my head upside down to clear
<Guest6> other times they are open ulcers raised a little
<SpringOP> mine are NOT like that Guest6
<CareOP> the bumps would be "palpable" could feel them
<CareOP> me too Guest2!
<CareOP> rings all the time - left ear!
<CareOP> any "smelling" problems?
<Guest6> They are painful and hurt deep
<CareOP> did you tell your doctor Guest6?
<SpringOP> has your doctor seen these Guest6?
<Guest3> where does vasculitis occur?
<Guest6> I have had five biopsies all different
<CareOP> Guest2 - is your sense of smell affected?
<Guest6> I also have psoriasis, but it is not that
<CareOP> what did they say Guest6?
<SpringOP> different results or different tests?
<Guest3> My smeller is way sensitive
<CareOP> my mom has psoriasis
<CareOP> mee tooooo!
<Guest2> Careop - no but tase is
<Guest6> different results
<CareOP> I smell burnt rubber frequently! UGH!
<SpringOP> I do not taset salt very well, I no longer salt when cooking, family will not let me, hehehehe
<Guest6> My sense of smell is very sensitive
<Guest3> I smell EVERYTHING...even way far away
<Guest3> i drive others crazy!
<Guest2> My sense of smell is accute but tongue is very sensitive to foods now
<CareOP> anyone have trigeminal neuralgia - face pain?
<Guest6> It can come in handy checking for alcohol and cigs on teenagers!
<Guest3> my tongue hurts alot-can't eat many things now
<SpringOP> not I
<CareOP> eeks Guest3 - you go up and sniff them! ha!
<Guest3> Your right Guest6!
<Guest3> :)
<SpringOP> do any of you take salagen?
<Guest2> Careop --I have TMJ
<CareOP> me to Guest3
<Guest6> I am on Methtrexate and Celebrex
<SpringOP> I have TMJ, but had work on my teeth to remedy that
<CareOP> Guest2 I get trigeminal neuralgia! really hurts!
<Guest3> I have TMJ too
<Guest3> I wear a splint most of the time
<CareOP> I have jaw aches also
<Guest2> Guest6 - does Celebrex make you gain weight - it did with me
<Guest3> Trigeminal neuraligia???????
<Guest6> is it TMJ or just jaw pain from swollen glands
<Guest3> boy careop-new words for me tonight!!!
<CareOP> face pain - shooting burning!
<Guest6> not me
<Guest2> My whole face hurts so bad sometimes -- I feel like ripping all my teeth out
* CareOP is happy you don't know it Guest3!
<Guest2> Also have very 'tender spots' on face and in scalp
<Guest6> I have that type of pain as neuropathy in hands and feet
<CareOP> yep me too Guest2 - can't eat cause it hurts to sometimes!
<SpringOP> ah, that was my next question Guest2, just could not think how to prhrase it
<CareOP> Guest6 mine is leg and BUTT!
<Guest6> Guest2- I did gain weight
<Guest3> What part of Sjogren's do you all have the hardest time dealing with?
* CareOP loses weight!
<Guest6> fatigue
<CareOP> pain!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
<CareOP> everyday!
<SpringOP> dos anyone here have a problem with depression.
<Guest2> My SS seems to jump from one thing to another
<Guest2> There's always something everyday
<CareOP> yes Guest2 it's true!
<Guest6> same here by the time I get an appointment its something new
<SpringOP> right now it is my dry eyes and fatigue.
<Guest2> Mild depression Spring
<Guest3> it sucks
<CareOP> anyone have "auditory hallucinations"? eeks!
<Guest6> no depression, just tired
<CareOP> had depression but not in a while
<Guest3> auditory hallucinations?
<CareOP> yes fatigue a bidg problem too!
<Guest2> Care- what are auditory hallucinations....
<SpringOP> mine is mild too Guest2, I take paxil, but the doc at mayo told me it is drying and she would have me changed to effexor
<CareOP> yep hear things that are not there
<Guest6> hearing things? or listening to things in your head
<CareOP> last flare I had began with those I was thinking I was going crazy!
<Guest3> i don't know...what i hear is there right???
<Guest6> What do you take for it?
<Guest2> Don't take anything Spring.......just wait it out. I know I'm back when I play my music again
<CareOP> hearing
<CareOP> ha Guest3
<Guest6> like a ringing noise?
<Guest3> I miss not being able to play my guitar
<CareOP> this was dogs growling at night - no dogs!
<CareOP> no sounds
<Guest6> yikes
<Guest3> i figure if i hear dogs there are dogs
<Guest3> !!
<CareOP> sometimes I also hear music that is not there
<Guest6> I would definitely see a neurologist about that
<CareOP> ha! no dogs! a pack of growling dogs was not in y room! ha!
<Guest2> Never had that Care..........
<Guest3> I guess that has happened to me too, but i figure it is a bonus
<CareOP> I see a neurp Guest6
<CareOP> and he knows
<Guest6> what drugs do you take?
<CareOP> really Guest3? what happened?
<CareOP> prednisone
<Guest6> That could be the reason
<CareOP> I have taken prednisone since jan 1995
<CareOP> no low dose
<Guest6> How long have you been hearing the dogs
<CareOP> 10 mg every day
<Guest6> :)
<Guest3> CareOP, are you a part of TalkSjo?
<CareOP> only with the last flare in December
<Guest2> I'm not up on all the meds. What is prednisone for?
<SpringOP> when I took prednicone dospak for poison ivy 2 years ago, I flet like my old self, could hardly believe the difference.
<CareOP> no Guest3 are you?
<Guest3> Yes
<Guest6> what is talkSjo
<Guest3> an email list for SS folks
<CareOP> Do any of you know Mary Ellen Brennen?
<Guest6> prednisone is a steroid and antiinflammatory drug
<Guest3> no
<CareOP> I have talked to her
<Guest3> who is she?
<CareOP> she is invloved with the SSF
<Guest5> well I gotta go
<SpringOP> I believe I have heard of that list, where do you go to get to it?
<Guest2> Is Sjo the e-mail List -- I'm on that
<CareOP> knows the president and is very involved with the group in Philly, Penn
<Guest2> I have learned more on that List than fromany of my doctors
<Guest3> just a second and i will lit you know how to get to it
<Guest3> me too Guest2
<CareOP> I think I was on the list
<CareOP> I get tons of e-mail already...
<SpringOP> bye Guest5, so glad you stoped in tonight!
<SpringOP> ok when you get to it
<Guest2> I'm so thankful for all the support groups
<SpringOP> me too, but if there is a condensed version it would be nice
<CareOP> me too Guest2!
<CareOP> couldn't survive without it!
<Guest6> I am online about an hour or more a day just reading mail!!!!
<Guest3> alot of email-sometimes it is very overwhelming
<SpringOP> I wold definitely be crazy if there were no support groups
<Guest2> I always thought I was a hypocondriac.........until the LIST
* SpringOP is so glad you have all some here tonight!
<CareOP> I know Guest2 - we all felt that way! me too!
<Guest6> I feel like I need to have all my parts evaluated after I read the list
* CareOP is too poor Spring thought she was losing it!
<Guest6> I don't know what is Sjo and what is menopause like bladder stuff or GI
<CareOP> eeks Guest6!
<SpringOP> sounds like I need to get on it. at least try it out
<CareOP> that's what I was telling you about Spring the SS-L list
<SpringOP> yes, I am a hypo, aren;t I? my symptoms so mild so far....drive my self crazy
<Guest3> You may visit this list's home page at:
<CareOP> right Spring!
<CareOP> no Spring - U R not!
<Guest6> I tried to find a "wellness" clinic that would emphasize getting things back to normal
<Guest3> TalkSjo.listbot.com
<CareOP> any luck Guest6?
<SpringOP> is there such a thing Guest6?
<SpringOP> is that a web page?
<Guest6> I haven't found it yet!!!!
<CareOP> gee Guest3 that one I don't think I joined - lots of mail?
<SpringOP> :-(
<Guest3> tons of mail!
<Guest3> but very informative
<Guest3> and neat folks
<Guest2> I'm looking at SS-L@POSTOFFICE.CSO.UIUC.EDU
<CareOP> the problem with seeing so many doctors - they never agree on anything! gets confusing who to believe!
<Guest3> Guest2 i am on that one too
<Guest2> That's what I have printed on one of the e-mails for the LIST
<SpringOP> is TalkSjo.listbot.com what I type in the browser?
<CareOP> that's the one I joined - but cancelled too much mail]
<CareOP> I belong 2 two other support groups
<CareOP> lots of work and e-mail
<Guest6> What are they?
<CareOP> National MS Society
<Guest6> Do you have mS?
<Guest2> Yes, lots of e-mails but you can delete and keep only ones related
<CareOP> probably not - but am a possible MS with Sjogrens
<Guest3> well, i gotta go. Good to chat with you all and hang in there with SjS
<Guest3> Chins up-right?
<CareOP> come back Guest3! nice meeting you!
<Guest3> will do!
<CareOP> :o}
<CareOP> stay well!!!!!!!
<CareOP> oops lost Spring
<CareOP> any topics you ladies what to discuss at the next chat?
<Guest2> Can't think of a topic but enjoyed this tonight
<SpringOP> wOW, that was the biggest computer lockup I have had in ages!
<Guest6> I would like to find out how treatments work
<Guest2> what was that - are we cut off
<CareOP> strang goings on tonight!
<SpringOP> no
<SpringOP> it was my computer, I think. must have overloaded it with all this technical talk
<Guest2> How long do we get to stay on -- this is my first chat
<CareOP> ok Guest6 - what treatments? that is a large area
<SpringOP> it is scheduled for an hour. but sometimes we stay longer
<CareOP> usually an hour Guest2
<CareOP> I am getting "Guest2gy" right now!
<Guest6> Good question maybe medications
<Guest6> maybe alternative things
<CareOP> ok
<Guest2> What was tonight's subject
<CareOP> sounds good
<SpringOP> what would you all like to see as a topic for next week?
<CareOP> Diagnosis
<CareOP> Tonight's Topic is "SJÖGREN'S SYNDROME - THE DIAGNOSIS" Remember your personal concerns will always come first.
<SpringOP> oh, that is what you are asking, hehe
<CareOP> it only takes forever to get one!
<Guest2> That's true
<SpringOP> how about selecting one symptom and beating it to death
<CareOP> we kinda got sidetracked - talked about everything!
<CareOP> yes mam!
<SpringOP> like fatigue, and what meds and how to deal with it?
<Guest2> We all have so many different ones
<SpringOP> yes, true
<SpringOP> just was an idea
<CareOP> that is very true Guest2!
<CareOP> PAIN!!!!!!
<CareOP> Symptom management
<SpringOP> so what is your list for chats?
<Guest2> I'm not in extreme pain.........but just get fed up dealing with it all
<CareOP> true Guest2 - but it can get really bad in a flare - burn like on fire!
<Guest2> Symptom management is fine with me
<SpringOP> oh, was it meds?
<Guest6> Have you tried Celebrex?
<CareOP> can't afford it!
<CareOP> Neurontin cost me 184 a month!
<Guest6> It is expensive but works great
<Guest6> What do you take it for?
<CareOP> then I have 3 more prescriptions to fill
<SpringOP> i tried vioxx and it was great. but I got fluid retention worse, but may not be that
<Guest6> probably was Celebrex a little too
<CareOP> my pain is mostly nerve pain some joint pain
<CareOP> anyone get lots of pain in hands - and swelling ?
<SpringOP> now Ihave tried sulindac and it works too. again the fluid, but then I sometimes have fluid when not using these
<Guest6> Yes
<CareOP> did nothing for me spring
<CareOP> U @ Guest6?
<Guest2> I took Celebrex for migraine 'prevention' from neuro -- did nothing
<Guest6> I have my wrists injected with depomedrol once a year and wear splints to bed and it seems ok
<CareOP> I tried Toradol - did nothing
<SpringOP> it rids me of the hip and knee and some of the foot pain and stiffness
<Guest2> Oh my heavens Guest6 -- sounds painful
<CareOP> gee I hope mine don't get that bad - have RA also Guest6?
<SpringOP> get this! for migraines....
<Guest6> It only takes a minute
<Guest6> No I also have carpal tunnel
<CareOP> anyone elso take Prednisone?
<SpringOP> I have glaucoma and since diagnosis of that, I am on betoptic drops and that has mediated my migraines
<Guest2> Yes Spring......for migraines.......the neuro suggested it
<CareOP> oh yep common in Sjogrens Guest6
<Guest6> no I am afraid of having problems from prednisone
<Guest6> esp diabetes
<CareOP> gee ladies I hate to go, but I am getting tired---
<CareOP> I just don't have any choice Guest6 - next drug would be chemo!
<Guest2> Who has primary SS and who has Secondary
<CareOP> tht's worse!
<SpringOP> so even though I no longer need the eyedrops since yey surgery, I still take them witht he blessing of all my doctors, cahuse it makes my headache mush more tolerable and easier to control with imitres
<CareOP> I guess primary
<Guest6> II have primary
<SpringOP> look at that typoing.
<Guest2> Thank goodenss for Imitrex Spring
<Guest6> woops
<CareOP> ha! tired ladies and keys that stick!
<CareOP> :o}
<SpringOP> my rheumy is undecided which i have if it is primary ss or secondary to MS
<CareOP> my keys need a soacking! me too!
<Guest2> I have to go too.........enjoyed tonight and will join you again
<Guest6> when is the next one?
<SpringOP> I need to go also, my eyes are burning....I hate this@
<SpringOP> same time next week
<CareOP> when blood tests are normal for Anti_ro and La it's difficult to know
<Guest6> I have + LA
<CareOP> me too night ladies! so nice meeting you!
<SpringOP> yes, come back again
<Guest6> Bye
<SpringOP> bye sweet things
<Guest2> Bye
<CareOP> untill next week!
Sjögren's Syndrome — The Diagnosis
