Transcripts
March 12, 2000
Cognitive Problems and Sjögren's
<SpringOP> hi care
<CareOP> how U doing?
<SpringOP> ok, tks
<CareOP> I just got on Katie had the computer all day!
<CareOP> How R your eyes doing?
<SpringOP> well, better, humidity was up to 95 % yesterday so they felt better.
<SpringOP> still fairly good today
<CareOP> we were going to take about our symptoms - remember? Just haven't had time!
<SpringOP> I am trying to wean off the detrol now. took none this am
<CareOP> mine are dry - I have been stiff allday!
<SpringOP> bummer
<CareOP> detrol? pee meds?
<SpringOP> I am still , but have been gardening.
<SpringOP> yes
<SpringOP> the more stuff I can get off the better IMO
<CareOP> do you ever get a real stiff tight feeling around your waiste and on down?
<CareOP> and feel realy heavr?
<SpringOP> no, just my legs, especially my right one., I thought it was the fluid retentions, but that is gone now.
<CareOP> oops!
<CareOP> you get tight feeling there and heavy?
<SpringOP> are you still on the extra steroids?
<SpringOP> tight, yes, kind of heavy, hard to describe
<CareOP> yep - but tapering - got up and my face was really puffy today!
<CareOP> this time I am seeing some steriod effects - like being puffy!
<CareOP> Hi guest!
<SpringOP> how are you this evening guest...
<CareOP> Welcome to Sjögren's World! Tonight's Topic is "Cognitive Problems and Sjögren's" Remember your personal concerns will always come first.
<Guest1> Hello! Just rushed back from dinner!
<CareOP> how U doing Guest1?
<Guest1> Well I am always getting fatter-doesn't that mean I am healthy?
<SpringOP> hey Guest1, how ya do?
<CareOP> we finished about 30 minutes ago - did you go out to dinner Guest1?
<Guest1> How are you?
<CareOP> right Guest1! ha!
<SpringOP> hehe at Guest1
<Guest1> I am doing a lot more dining out lately!
<SpringOP> sounds like a good plan to me Guest1
<Guest2> Hello
<CareOP> Hi Guest2!
<Guest1> Is there a topic for tonight?
<Guest2> Is everyone talking bout sjogren's?
<CareOP> I would like to
<CareOP> yes we are!
<SpringOP> yes we are Guest2, do you have Sjogren's?
<Guest1> Me too!
<Guest2> Do not know yet ...
<Guest2> being tested
<Guest1> Cognitive problems hm.....
<CareOP> possible huh? we can go for years llike that Guest2
<Guest2> what do you mean?
<SpringOP> want to tell us about it? are you real frustrated?
<Guest1> What tests have you had so far?
<CareOP> right Guest1! familiar with those? ha!
<Guest2> you bet. They are setting all tests up tomorrow
<Guest2> not for tomorrow, but will set them up tomorow
<CareOP> It took about 5 years for me
<Guest1> Good luck! What made you get the tests?
<Guest2> anyone have the CNS part of it?
<Guest1> It took me about 10!
<Guest1> I don't know
<CareOP> any of you kave the neurocognitive testing done?
<CareOP> I do!
<Guest2> which are those?
<CareOP> wow Guest1 -10!
<CareOP> Hi Guest3!
<Guest2> what are the symptoms of t he CNS part of it?
<Guest3> Is this the Sjogren's chat?
<SpringOP> hi Guest3, welcome to Sjogren's chat
<Guest2> welcome
<CareOP> well MS type symptoms and memory and thinking problems
<SpringOP> you are in the right place!
<Guest1> I just gave up for a while and took te fact that it was only neuropathy and carpal tunnel but the disease marched on....
<Guest3> Hi, thought I wasn't going to find it.
<CareOP> Guest1 - U have the CNS type?
<Guest1> It is tough to sign on at firdt!
<Guest2> anyone have numbness down one side or spasms in diferent parts?
<CareOP> you found us Guest3!
<CareOP> yep can be confusing
<Guest1> I don't know I have primary so far
<SpringOP> well, you did and I for one am sure glad you did! Welcome!
<CareOP> I think the Jave chat is very confusing
<Guest1> but with many unanswered questions
<Guest3> Thanks!
<CareOP> what type of ANA pattern Guest1?
<Guest1> Speckled does that sound right
<Guest2> I only have had the ana test, but they are doing other blood/lips
<CareOP> I have nuceolar
<SpringOP> a warming cyber-handshake to Guest4 !
<Guest1> I had the lip biopsy too Make sure you have a good oral surgeon. Mine was positive
<CareOP> yep take lots of blood - any MRI's Guest2?
<Guest4> thanks how r u?
<Guest1> However, two doctors still disagreed that it was Sjogrens
<Guest2> over a year ago, but they were thinking ms
<CareOP> good Guest4! and you?
<CareOP> what are your symptoms Guest2?
<Guest4> c u later bye
<SpringOP> did that hurt much? Sounds like they are giving you the whole workup Guest2, did they diagnose you with something else first?
<CareOP> Yep Guest1 - I run into that also!
<Guest2> numb - left side when I wake up. legs kill at times, stomach kills, head numb
<SpringOP> by Guest4
<CareOP> left side huh - me too!
<Guest1> I didn't complain of dry eyes or mouth but always had them I didn't know watering eyes were dry!!
<CareOP> pain?
<Guest2> eye problems - cornea, dry eyes, dry mouth
<SpringOP> you leaving already Guest4?
<CareOP> mine are terrible in the sunlight squint even when overcast outside
<CareOP> Guest4 have Sjogrens?
<Guest2> I remember driving and all of a sudden it is too bright for me - can't see.
<Guest1> My head has pain from base of neck to mid skull. My CAT Scan says areas of inflamation, but my neuro says oh it must be mugraines
<CareOP> me too Guest2 - can't drive at night - car lights blind me! anyone else like that?
<Guest2> can't drive at night - don't see too well.
<SpringOP> oh boy, Guest1, crazy isn't it?
<Guest1> I have a hard time with light isn't that just from the eyes and not CNS?
<CareOP> they never know for sure - don't biopsy the brain! eeks!
<Guest3> I don't drive at night either
<CareOP> yeo Guest1 it would be
<Guest2> why not biopsy the brain cheeks?
<Guest1> cheeks?
<CareOP> well brain stuff can be risky!
<CareOP> yes cheeks?
<SpringOP> I drive at night sometimes, but real careful.
<Guest2> anyone have the numbness?
<Guest1> what are brain cheeks?
<CareOP> I really can't at night - I just can't see!
<Guest2> typo...sorry!
<CareOP> I do Guest2 - U 2?
<Guest1> I have numbness in arms and hands, legs and feet
<CareOP> burning pain anyone?
<Guest2> all sides, one side? does it go away?
<Guest1> Yes- neuropathy
<CareOP> I have bad butt pain - the entire sciatic nerve!
<Guest1> right arm is the worst
<CareOP> comes and goes Guest2
<Guest2> what is neuropathy.
<CareOP> do you take any meds for it Guest2?
<Guest2> put me on prednisone, took me off til definitive diagnosis
<CareOP> it is - means a problem with nerves
<Guest2> having a VERY hard time
<CareOP> did the Pred help Guest2?
<Guest1> It is the numbness, tingling and pain caused by inflamation to the peripheral nerves Glove and stocking distribution means legs and feet, arms and hadns...
<Guest2> seemeed to.
<CareOP> why is it the worst in mt butt?
<CareOP> :o[
<Guest1> I have had steroid injections iinto my wrists but never oral.
<CareOP> Neurontin helps with the neuropathy
<Guest2> howso? Like pain or having to "go?"
<SpringOP> you are having very long stockings!
<CareOP> both Guest1 - and burning pain in the perineum also!
<Guest1> Do you mean you feel tingling in your bladder area?
<Guest2> my joints are not working well together either.
<SpringOP> not me, I just have to go a lot, and too often and urgeency
<Guest2> I have bladder problems too!!!!
<CareOP> I have problems with urgency
<CareOP> oops
<CareOP> sinatra still here?
<Guest2> urgency - do you take urocit???? potassium helps....
<SpringOP> my joints get wacko Guest2, but not all the time. Comes and goes.
<Guest1> I can't decide if it is menopausal or sjogrens or the result of last years hysterectomy
<CareOP> which ones Spring?
<SpringOP> hips and knees
<Guest2> like your knee isn't in the right place and makes noise?
<Guest1> All I know is I spend a lot of time in the bathroom and sleeping!
<CareOP> wow Guest2 me too a grating noise????
<SpringOP> not noises for me, but stiff and pain
<Guest2> in the bathroom - UROCIT if it is bladder. takes 1 month to work
<SpringOP> roflol, in the bathroom! ehehe
<CareOP> Gee Guest1 - I said the same!
<Guest1> You can have joint problems with osteoarthritis the same as anyone else
<SpringOP> but is that sjogren's too? it gets pretty confusing
<CareOP> anyone have sharp pain in finger joints? Like a knife?
<Guest2> how about TMJ anyone?
<Guest1> I have osteo in my knees and I get the cracking sound and pain, but the other joints are sjo
<CareOP> Yep - we tend to blame everything on Sjogrens!
<CareOP> anyone have pain in low back?
<Guest2> what are the commonalities in sjogreen's?
<Guest1> I had the fingrer paain too but the Celebrex and Methotrexate have really helped
<SpringOP> I have that, was treated by getting orthodontia to minimize it. Worked pretty well, plus I do bilfeedback to keep from clenching
<Guest2> pain in low back, then it hurts legs sometimes
<Guest1> Yes pain in low back when walking
<CareOP> I see my neuro and a new rheumatologist next month!
<Guest2> my pain in low back is when sitting
<CareOP> yep!
<CareOP> Yep! ha!
<CareOP> use a pillow to support lumbar area Guest2? it helps!
<Guest1> I have a bis comfy chair!
<Guest2> the pain goes from one thing to the next......
<Guest1> I guess we drove the boys away...
<CareOP> This Rheumatologist sent me a 5 page questioneer to fill out!
<SpringOP> tomorrow moring I go back to my neurologist - first time seeing her since a rheumy dxed Sjogrens. I was prob ms for 6 years. It should be interesting office visit
<Guest1> That is great that they look at the information first
<CareOP> ha! pee talk will do it!
<CareOP> lol
<Guest1> It is so hard to cram everything intoa visit.
<CareOP> sure is Guest1 - that's why we do weekly...
<Guest2> may 22 my appt. but primary to call for lip test, blood test and schirmer
<CareOP> right!
<SpringOP> my rheumatologist did that too! in October.
<Guest2> does mine sound like yours??? numbness all left side, starts in head/ear
<CareOP> gee they have a SjS Clinic - terrific!
<Guest1> I have it on both sides but I do get a lot of pain in the head
<CareOP> Yes left side worse
<CareOP> anyone get eye pain?
<Guest2> left side worse for me. comes and goes. feel like i might pass out with
<Guest2> heart palpitations at times too
<Guest1> Yes I remember we shared that last week Also I have pregalucoma
<Guest1> Yes heart palp
<CareOP> it can be difficult to diagnose considering the blood tests can be normal and U still have Sjogrens'!
<Guest1> FATIGUE
<Guest2> what is the best test????
<CareOP> me too Guest2! trouble swallowing?
<Guest2> swa,llowing pills lately for me.
<CareOP> neuropsychriatric for CNS Sjogrens
<Guest2> hard time to get a dr. to listen.
<Guest1> I had mildly positive tests ANA titer, Ro- La+, High sed rate + lip biopsy
<CareOP> I have been having problems with pills too and food gets stuck
<CareOP> what tier Guest1?
<SpringOP> my blood tests are normal and rheumy still says Sjogrens. so it can happen, she says as long as they are normal, I wil do well, so she will test every once in awhile
<Guest1> It felt like I had a lump in my throat
<CareOP> ne too Guest1
<Guest1> What do you ean tier? CareOP
<Guest2> ana normal for me and sed rate, but I have so many of the other symptoms
<CareOP> for your ANA?
<Guest2> any suggestions????
<CareOP> like mine was 1:640
<Guest1> That is OK the tests change from week to week Have the tests done when you feel like shit and they may be positive :)
<CareOP> U R so right Guest1!
<CareOP> not necessarily Guest2
<Guest1> Lip biopsy is very definitive They can see the foci of lymphocytes
<SpringOP> oh, go in when I am doing very bad, hehe, well the day I saw her I was doing bad....and she saw it. so it did help the dx.
<CareOP> mine was negitive 6 years ago
<Guest2> then what to do for sure?
<SpringOP> hello Guest5!
<CareOP> yep it helps if they see you bad!
<Guest5> Hi This is my very first chat
<Guest1> I pushed myself for so long I think I used up my future energy reserves
<CareOP> wow! Guest5! exciting!
<Guest2> how can we tell my cognitive problems???
<Guest1> Good question
<Guest5> It's my hobby-
<CareOP> memory - forget things - "attention" problems
<Guest2> feel like I could slip into a coma sometimes.....
<SpringOP> Guest2, they look at all the results, and I think standard def, is 4 out of 6 gets the dx. But you doc may diagnose from clinical signs as mine did.
<CareOP> brain fog!
<Guest1> I know I am not as sharp as I was But is it aging? menopause? alzheimers?
<CareOP> wow Sprinf - U did your homework!
<SpringOP> what's you hobby Guest5?
<Guest5> I even had a problem introducing my doc-
<Guest5> Guest5 watching
<Guest5> I can do that from my porch/deck
<CareOP> Oh - I love birds too!
<Guest5> They don
<Guest2> seems to affect my lungs too. Once pain, trouble breathing like asthma
<Guest1> Guest2 Did it occur after pregnancy or hormones
<Guest5> They don't seem to mind that I can't remember
<Guest2> my thyroid is messed again. not been pregnant.
<CareOP> ha! true Guest5!
<Guest5> I
<CareOP> what happens Guest2?
<SpringOP> lovely Guest5! I have a bird feeder right outside where my computer is.
<Guest2> I have Grave's as well - dx 7 years back
<Guest5> I'm having hand fog
<Guest1> I have never been pregnant, but I think fertility drugs did not help
<CareOP> what were the symptoms of thyroid problems?
<CareOP> pressure in the neck?
<Guest5> Try loss of hair for one
<Guest1> Is it possible to have thyroid problems and test still ok?
<Guest2> overactive ........ eat alot, not gain a lot of weight. 90 lbs. even though exercised
<SpringOP> hahaahha, hand fog, great term, Guest5
<Guest2> weakness, thought I was just going to die, yet this has been worse
<Guest1> I am the opposite the weight comes on continuously I am always hot
<CareOP> I have total body fog them! lol!
<Guest5> I'm having a lot of lung problems these days and CNS symptoms
<Guest2> does anyone have a HUGE hot flash, feel lightheaded then it goes away
<Guest2> what about the lung problems - what's it feel like?
<Guest1> That's me
<CareOP> I have problems with my neck - sometimes hurts to move and pressure too
<CareOP> yep!
<Guest1> me too
<Guest5> Hurts like heck.
<CareOP> get short of breath easily Guest2
<Guest1> I have always had problems getting gronchitis etc
<SpringOP> Grave's? Is that to do with your adrenal gland?
<CareOP> no thyroid
<Guest2> this is my first time on. why do you chat?
<Guest1> thats bronchitis
<Guest5> Short of breath-yep It's difficult to walk at times. I lose my voice a lot too
<CareOP> to help one another and exchange information
<Guest2> Graves' is thyroid gland. Sjogren's can wreak havoc on thyroid
<CareOP> finally have people who understand!
<Guest1> I think it is easier to talk to people who don't judge you and think you may not be ill
<Guest2> I meant - when do you chat other times?
<SpringOP> oh sorry, hehe I guess I forgot that
<CareOP> right Guest1 - for sure! But you look so good!!!!!!!!!!!!!!!
<Guest2> my doctor thought I was just crazy.
<Guest2> sometimes you feel great!!!!
<SpringOP> I lose my voice at times. It was half gone when I went to rheumy.
<Guest5> Actually, my doc says it's from severe inflammation of the airways.
<Guest1> I don't chat but am on the TalkSjo email list and it is just one long chat!
<CareOP> oh - just on Sundays for now for chats
<Guest2> Guest1 - what's that???
<SpringOP> so far, Guest2, this is our only chat time.
<Guest2> i didn't think I had asthma, felt like dryness or inflammation.
<Guest5> Yes, I lose mine mostly in the afternoon after I've been talking some.
<CareOP> yep but I get tons of e-mail already
<Guest2> anyone have email I can write to?
<Guest1> It is a Sjogrens email and list posting
<Guest5> I was diagnosed as asthma first then Sjogrens
<Guest2> how do I get to it?
<Guest5> I would have severe coughing spells when I was at work-talking on the phone to insurance companies no less
<Guest1> I can't remember I think I did it through MS World or ww.Sjogrens.Org
<SpringOP> was it a long time in between Guest5?
<Guest2> i was diagnosed with asthma and have the nebulizer. starts out like that sometimes.
<CareOP> I think its dry.org
<Guest1> I am just dry i my windpipe and seem to vcough a lot
<CareOP> I had severe asthma as a child
<Guest1> You might be right it si dry.org for the list
<CareOP> drink lots and chew sugarless gum - it helps
<Guest2> do you always feel like you need to drink water, but it does not help???
<SpringOP> I cough lots too. Does any one here take Salagen tablets for dryness?
<CareOP> yep!
<Guest1> Water and pee water and then go pee all day all night
<Guest2> heard of them - have not.
<Guest5> Not really - about a year. I'm a nurse and a friend doc told me I should see a rheumy.
<CareOP> any teeth problems?
<Guest2> dry mouth has been only recently.
<Guest5> I haven
<SpringOP> Guest2, if you drink too much each time, it does the oppiosite, so they say , sip the water keep it with you and sip.
<CareOP> dry nose anyone - really dry?
<Guest1> I had a lot of cavities but never noticed a real dry mouth
<Guest2> yes - dry nose. All of a sudden my dentist said I have
<CareOP> dentist loves that I chew sugarless gum - it helps
<Guest5> I haven't tried the tablets but do chew a lot of gum. It works well even tho I don't like to chew gum.
<Guest1> I always had nasal bleeding and sinus inf
<Guest2> lots of problems in mouth, tmj and stuff.
<CareOP> me too Guest5
<Guest2> i spit up blood last two days...... can taste it way back.
<Guest1> No tmj but my tongue burns at times
<SpringOP> mine is awfully dry, always has been, I leave a trail of used but clean tisGuest1s around the house, ready to re-use.
<CareOP> I use Saline spray and KY Jelly in my nose!
<CareOP> I am always sniffing!
<CareOP> dry dry dry!
<SpringOP> chewing gum wreaks havoc with the TMJ.
<Guest5> I had bronchitis just recently and it did scare me a bit. I was bleeding from the nose and had severe pain, laryngitis too.
<Guest1> I use vaseline in my nose sometimes
<CareOP> yep it can Spring
<Guest2> dry lips anyone?
<CareOP> what R your major complaints ladies?
<Guest1> I am just getting over laryngitis
<CareOP> yep mine splits
<Guest5> Oh yes, the gum can make the jaw complain.
<Guest1> The only thing I hate is the headaches and FATIGUE FATIGUE FATIGUE
<CareOP> major problems?
<Guest2> don't even chew gum. major pain lately all of a sudden
<CareOP> try the other end spring! lol!
<Guest5> Major complaint. I have three---fatigue, bronchial pain, and joint pain
<Guest1> I am being worked up next by immunologist as I have constant infections I spend about 16 weeks A year on antibiotics
<CareOP> fatigue - loss of appetite and PAIN! and then mind.....and... ha!
<Guest2> numbness left side in the a.m. as I wake. EAR Pain. visual disturbance, spasm of urinary, intestine and stomach
<Guest1> I want loss of appetite!
<Guest2> does anyone take meds??? I am just new at this
<CareOP> I have the ear pain and ringing?
<CareOP> yes lots
<Guest2> what does the ear pain feel like?
<Guest1> I have spasm of urinary tract and intestine
<CareOP> like a knife shooting
<Guest5> Guest2, I too am beginning to experience some numbness on the cheeks, fingers and toes.
<CareOP> rectal pain?
<Guest2> Urocit really helps urinary...... it's potassium
<Guest1> I get ear pain if my salivary galnds swell
<Guest5> I will be going to the neurologisst next.
<Guest2> My numbness can be whole left side from head to toe.
<Guest1> What does the Urocit do for the spasms and urgency
<SpringOP> dry eyes, dry nose(and hard to btreathe at night). and the migraines!
<Guest5> Rectal spasms. Yikes, I guess.
<Guest2> The worse part is the cold sensation around the circumference of head and numbness there.
<CareOP> I wonder why most of us have it in the left side?????
<SpringOP> Urocit? is that over the counter?
<CareOP> wow Guest5! You 2?
<Guest2> urocit is not over the counter. takes 1 month to work and you need
<Guest1> I get pain up middle of the head if the glands swell but it stopd at the eyes
<CareOP> they are rectal - internal spinchter - my neuro says - hurts!
<Guest5> Me 2
<Guest2> to be careful on acidic foods for awhile. it does work!!!!
<SpringOP> cold sensation, Guest2!!! I get that on my forehead and right eyelid, have for years, comes for months then goes for months
<CareOP> gas too Guest5?
<Guest5> Same here. Your neuro said that?
<CareOP> yep!
<CareOP> it's awful!
<Guest5> Yes, tomatos are out or very rare these days.
<Guest1> I never get coldness only hot
<CareOP> I sit on a heating pad - it helps
<Guest2> i feel like the disease - whatever it is - is trying to kiill me.
<Guest5> Guest2, I can equate with that.
<CareOP> it won't Guest2 - but can make you feel that way - can feel very ill
<Guest2> Guest1 - HOT flash or just hot.
<Guest1> It isn't going to kill me, but I may take my anger out on arrogant MD's
<SpringOP> ehehehehehe
<CareOP> right Guest1
<CareOP> :o]
<Guest2> AMEN
<Guest5> arrogant MDs-I can name a bunch.
<Guest2> they think you are fine
<Guest1> Hot and sweating hot and hot hot always It is 20 degrees and I don't need a coat
<CareOP> I prefer women doctors!
<CareOP> ha!
<Guest1> I have had some bad women doctors too
<Guest5> Or worse yet, "just" a woman
<Guest2> does the heat start from one location and like feel like it moves t hrough your blood?
<CareOP> Guest5 - get cold easily?
<Guest5> Cold sick or cold/cold?
<CareOP> true - my neuro is a man -and he believed me when no one else did!
<Guest1> The heat starts in the inside and then radiates out.
<Guest2> very cold - especially feet.
<CareOP> cold cold
<CareOP> ha ha
<Guest1> I sweat on my face and back and underwear area
<Guest2> my socks get wet and cold
<CareOP> yep - anyone have temperature drop very low ?
<Guest2> 97
<Guest5> Yes, hands are like ice at times. Tho I sweat at night too.
<CareOP> 95
<SpringOP> that sounds like a menopause hot flash,1 hehe
<Guest1> I am always hot wet on the outside dry inside My temp is us 97 degrees
<CareOP> I shake like crazy!
<Guest5> Shaky is my middle name.
<CareOP> teeth rattling cold!
<CareOP> ha!
<Guest2> I have had what I would figure 500 degrees flowing through blood
<CareOP> welcome to the club Guest5!
<SpringOP> my normal temp is sub normal
<Guest5> My kids won't let me get near them with a scissors
<Guest2> was dehydrated too...... they didn't care in hosp.
<Guest1> I also feel like 500 degrees at times Sometimes I can't tell if pain is in veins, muscles or nerves
<CareOP> I do get the hot sensations - ears turn brinht red - hands and feet too!
<SpringOP> wow, now that is one hot woman!
<Guest2> Guest1 - know the feeling.
<CareOP> ha! mine too Guest5!
<Guest5> heehee
<CareOP> :o]
<Guest2> it comes and goes sometimes quickly though - like a spell.
<Guest1> That pain has decreased a lot with Celebrex
<CareOP> Do any of you drop everything and slop everything? ha!
<Guest5> I am just laughing that someone understands
<Guest2> what's celebrex? anyone on placquenil?
<SpringOP> must be magic! WE are all magic people
<Guest1> Yes
<Guest5> Yes-started Plaquenil just 4 weeks ago.
<Guest2> does it help Guest5??
<Guest1> Celebrex is a new Cox2 ihibitor- an antiinflammatory agent that doesn't ruin the stomach
<CareOP> me prednisone
<Guest1> Like a super Motrin
<SpringOP> how's it going Guest5, with the plaquenil?
<CareOP> wow send me some!!!
<Guest2> they took me off the prednisone til dx. i could scream.
<Guest5> Today was the first day that I felt any energy.
<CareOP> rotten Guest2!
<Guest5> I'm on Prednisone too
<CareOP> who took u off Guest2?
<Guest2> my legs kill.
<Guest1> I worry about prednisone side effects esp diabetes, and bone
<CareOP> gee Guest5 - we have lots in common!
<SpringOP> mine ache inside llike the flu
<Guest2> my primary doctor til definitive diagnosis
<Guest1> Get a rheumatologist
<Guest2> does anyone think my symptoms sound the same???
<Guest5> Yes-we'll have to share emails
<CareOP> yep - but I had hepatitis once from a drug so I'm afraid of Methotrexate
<CareOP> sure!
<Guest1> They sound a little like mine Guest2
<Guest5> I hope you didn't go off the Pred cold turkey.
<SpringOP> Guest1, does the Celebrex give you any fluid retention? I used the Vioxx, which was great, but got swelling in extremities
<Guest1> I am on Methotrexate but get blood test every month
<Guest2> Guest1 - I will write to you. I feel like fluid in the left side of the head
<CareOP> yes Guest2 I think so - tell us more of them Guest2?
<Guest5> I use Vioxx too.
<Guest1> I fell like my whole body is a big pile of fluis
<Guest2> i heard of vioxx for fibromyalgia
<Guest1> Celebrex causes some retention of fluid
<Guest5> Yes, I think some use it for that.
<Guest1> So does methotrexate and Premarin so I am puffy:}
<SpringOP> Vioxx is another of the Cox2
<SpringOP> :-( i do not think that would be good.
<Guest2> wake up, feel coldness in head, goes through head, numbness follows it into the arm, leg, jaw.
<Guest5> Premarin can do that. Not sure about the methotrex
<Guest1> Yes only you take that once a day and it is cheaper by a little bit from Celebrex
<Guest2> pain in left leg. this time - not painful in right leg.
<CareOP> so first in morning worse than later in the day Guest2?
<SpringOP> you only feel that way when you wake up? how does it go the rest of the day?
<Guest2> comes and goes during the day. I am up five minutes and it happens.
<CareOP> how about late afternoon Guest2?
<Guest5> My symptoms are what wake me in the morning-anybody else?
<Guest2> Been taking valium as I was up 4 days in a row because of the numbness and disturbance in vision
<Guest2> it is VERY SCARY.
<CareOP> mine are worse in the afternoon
<Guest2> mine come and go. worse in evening and morning.
<Guest1> I don't know is that Sjogrens orMS?
<CareOP> do you see both a neuro and a rheumatologist Guest2?
<Guest2> Thinks symptoms vary a bit from person to person
<Guest5> Yes, I have a short time between 9 and noon when I have a break and then things get bad again
<CareOP> yes Guest2
* SpringOP agrees with Guest2
<Guest2> they tested me for ms a year ago. Left leg went to sleep for 4 weeks.
<CareOP> totally asleep?
<Guest1> I think symptoms do vary and it makes a doctor that doesn't see a lot of patients have a hard time knowing what is Sjogrens and wha is not
<SpringOP> and you were neg for MS? what tests did they do>
<CareOP> could still walk?
<Guest2> negative for ms, thought still a vascular problem. It went away
<Guest5> Yes, Sjogrens seems to share a lot with Lupus
<Guest2> I then figured - if it's not broke, don't fix it -- I complain enough
<Guest1> With neuropathy it can be difficult to walk on feet or use hands due to swelling of nerve sheath
<Guest2> sometimes from the pain in my legs, I am so weak - can't walk.
<CareOP> I have problems "knowing" where my feet are
<Guest5> Does anyone have problems with balance?
<CareOP> yes Guest5 I sure do!
<Guest2> my shoulders make my arms go to sleep most every night.
<Guest5> CareOp, Thanks for that. I thought it might just be me
<CareOP> Oh yep I read that book
<Guest2> does anyone know where a good sjogrens book is???
<Guest5> I really have to watch navigating the stairs
* CareOP says no, not just you Guest5!
<Guest2> saw one on internet, but can't find it again.
<CareOP> ha me too - watch my feet and hold on for dear life!!!!!!!!!!!
<Guest1> There is one available from The Sjogrens Foundation I think at Sjogrens'org
<CareOP> there is no such book Guest2! lol!
<Guest5> Oh, the best book is the"New Sjogrens Book" from the Sjogrens
<Guest2> what website, do you know Guest5?
<CareOP> I read all of them
<Guest1> I think doing research on net is sometimes more productive esp dry.org and medscape and MSWorld
<Guest5> I ordered it from the Sjogrens Foundation. It came very fast.
<Guest2> dr's get mad at me for doing research.
<CareOP> MedLine too
<CareOP> PubMed
<Guest5> I wouldn't have done well without it
<Guest2> what is medline? and pubmed?
<Guest1> Get a new doctor Guest2 if he is afraid of not knowing all of the answers
<Guest2> I did.
<CareOP> I wouldn't go to him - mine think it's good I want to know!
<Guest5> I think some of the regular book stores can order it too
<Guest1> They are online research tools
<Guest2> This other guy is a christian - he prays with me - it's nice!
<CareOP> Amazon.Com too - best price there
<CareOP> how R U Guest6?
<Guest1> Guest2 go to www.medscape.com and go to Pharmacist website and there is a new article on Sjogrens
<Guest2> Sometimes I cannot truly remember if I have done something
<Guest6> good, this my first time in here
<Guest5> Me too Guest6
<Guest2> done something like - have I taken a bath today?? Takes me a bit.
<SpringOP> that is so scary Guest2, I know whow you feel on that.
<CareOP> that's attention problems Guest2-I have that too
<Guest2> hi Guest6 - do you have sjogrens's
<Guest1> I must say I am not a sharp as I was and I take continuing ed ad can't remeber anything
<SpringOP> annie and suz, we are typing pretty fast, just join in when you feel like
<Guest6> do i have what
<Guest2> the head thing scares me the most. Seemed to grow worse after I started taking cold medicine....
<CareOP> sjogrens syndrome Guest6?
<SpringOP> are you looking for the MS chat?
<CareOP> Guest2 that can come and go
<Guest1> Cold medicine can make you drowsy and disoriented
<SpringOP> Guest6?
<Guest2> it does come and go. Does medicines help?
<CareOP> sure can
<Guest5> Yes, memory comes and goes-thank God
<CareOP> fatigue does not help either
<Guest5> That means it will come back
<Guest6> oh, i have ms
<Guest2> cold meds. make me feel sick and cold and numb in my head.
<CareOP> Guest6 U can stay
<SpringOP> This is a chat for Sjogren's Syndrome, which has symptoms similar to MS. The Ms chat is in #MSWorld
<CareOP> Sjogren's is very much like MS in some ways
<Guest5> What are your symptoms Guest6
<Guest1> What ingredients are in your cold meds?Antihistamines or decongestants
<Guest6> wait, now , what, isnt this a ms chat room
<SpringOP> no Guest6, you got the wrong room, do this /join #MSWorld
<CareOP> this has been a terrific chat - new friends like me! eeks!
<Guest5> Great CareOP-
<Guest2> I was taking triaminic for sinus troubles, otherwise the lung thing starts, then dr. gave me guaifenesen ....... it's been terrible since!!!
<Guest1> Do you think I should get an MRI?
* CareOP hugs Guest5!
<Guest1> Just plain Guaifenesin or with other things in it
<Guest2> Guest1 - have you been diagnosed???
<SpringOP> Guest2, when you take Gualfenesin, you MUST drink lots of water or your head will block up.
<Guest5> I think a person needs to be careful when taking cold meds and with Sjogrens
<CareOP> don't U just love knowing U R not alone with this - people understand! :o]
<Guest2> plain guaifenesin. liquid form. other cold meds. make me sick too!!!!
<Guest6> oh i didnt know that
<CareOP> of your brain Guest1?
<Guest2> Yes - I ended up in emgcy room w/dehydration the next day.
<Guest1> I have Sjogrens ButI may have an immunity problem also I also am being checked for IBS and I have no answer for my head pain and swelling
<SpringOP> Guest6, do you want to get to the MS chat?
<Guest5> Sjogrens is so drying, it is really difficult to know exactly how to handle cold symptoms without making things worse
<Guest2> Guest1 - do you have irritable bowel? any meds?
<SpringOP> you can stay here if you like, but the other chat room has MS folks in there right now
<Guest1> You have to drink a lot of water for guaifenesin to be effective
<CareOP> yes right Guest5!
<CareOP> does it help the lung problems of Sjogrens?
<Guest1> I have irritable bowel
<CareOP> I probably do too Guest1 - so much gas!
<Guest5> My last "cold" I managed with Benedryl
<Guest2> does what help the lung problems - don't know of anything yet.
<SpringOP> that is right Guest5, I think all those cold meds have drying drugs in them
<CareOP> good to know! Thanbks!
<Guest1> I don't have gas just diarrhea day and night
<Guest2> Guest1 - what meds? any?
<Guest2> maybe it is the drying - i get more sick from the meds.
<CareOP> I have tons of GAS big time!
<Guest1> No meds for IBS
<CareOP> cold meds especially Guest2
<Guest2> I either have diarrhea or spasms..... both .... take donnatal and helps that.
<Guest5> Guest1-you have my sympathy--I can hardly stand myself at times
<SpringOP> that may be the drugs dying you out, it is difficult to decide which to work on
<CareOP> yep when nothing works right! ha!
<Guest2> i stay awayy from anything but triaminic. ALL REST MAKE ME SICK
<Guest5> I have been using acidophilus for the gas taken just 1/2 hour before meals. It helps
<Guest1> Do you mean what meds to take for colds Guest2? I would just use saline and maybe a moisturized formula of Afrin for 2-3 days
<CareOP> good advice Guest1
<Guest1> No benadryl as it is drying and no pseudoephedrine as it is a stimulant and dries also
<CareOP> other stuff just dries you out too much
<Guest2> it's almost like the cold meds make me toxic
<Guest1> Claritin is a good antihistamine if you don't want to be too dry
<CareOP> we should have a drug chat!
<Guest5> Yes, Guest1 the Saline Ayr nasal spray does help a lot\
<Guest2> my hips are aching ...... from one thing to the next. usuaully left side
<CareOP> me too Guest2 - hurts even in bed!
<CareOP> let me ask U think Guest1
<CareOP> Is it unusual to get hepatitis from Tegretol?
<Guest5> There are days I just feel like joining
<Guest1> I know you can get liver damage but I have never seen a case I used to know every detail ofevery drug but my mind is dead!
<CareOP> he me too Guest5!
<CareOP> ha!
<Guest5> It's just a strange way we get to where we are
<CareOP> can't hit the right keys!
<Guest2> do your legs hurt - almost like sciatic nerve?
<CareOP> yes
<Guest2> what causes liver problems?
<SpringOP> I am just using a nasal saline solution to get through pollen season, and drink lots of water.
<CareOP> Tegretol
<CareOP> Guest1 - is that reaction rare?
<Guest2> does anyone have the dry eyes, cornea scratches like waking up?
<CareOP> my eyes usually worse at night
<Guest2> what does anyone do for the leg pain? kills sometimes
<Guest1> I must admit I can't remember but I know I haven't heard of many cases I can check for you if I remember
<Guest5> CareOp-eyes hurt every evening
<CareOP> heating pad and Neurontin Guest2
* CareOP just loves Guest5!!!
<Guest5> I use a warm washcloth over the eyes each morning
<Guest2> what is neurontin???? script, I assume.
<CareOP> thanks Guest1 - my liver scares me!
<SpringOP> I have dry eyes but no cornea damage yet, thank goodness
<Guest2> helps if i sit in the tub, but comes back 20 minutes later.
<CareOP> hepatitis is awfull!
<Guest5> While I was in school I had to pack them each day to get them open
<Guest1> Just keep an eye on using drugs that are metabolized through the liver like Methotrexate
<CareOP> it's an eplepsy drug Guest2
<CareOP> I know Guest1 - my neuro is hesitant to use it on me
<SpringOP> soak in a hot bathtub for painful legs. but not too long, it is drying to saty intub too long
<Guest2> they said it was due to grave's at the times, but there was something happening with my cornea - they gave me a steroid.
<Guest5> It seems a miracle that the liver is able to tolerate at all -the stuff we put through it
<CareOP> drops Guest2?
<CareOP> right on Guest5!!!
<Guest2> drops only help after I wake up and can pry them open. some days worse than others.
<Guest1> My liver is probably better on Methotrexate because I can no longer drink!
<Guest5> Has anyone had punctal occlusion?
<Guest2> That bladder thing was a killer til I got the urocit (potassium)
<CareOP> gee ladies, I have loved this, but getting close to my bedtime
<Guest2> what is punctal occlusion?
<CareOP> do U mind if I go?????? :o]
<SpringOP> nope
<Guest5> It's where they close the tear duct
<Guest1> I have never heard of Urocit I have to deal with thebladder next this week it is the immune system and the bowel
<CareOP> see all of you next week? and Guest2 we understand how u feel - try not to worry too much - ok?
<Guest2> they tried to close my tear ducts, but didn't help enough.
<Guest1> Careop it is to early
<Guest2> Guest1 - the Urocit really has helped me - I felt the urgency for years.
<Guest2> Seemed to be brought on by a tetracycline.... blood in urine (microscopic)
<SpringOP> so you need a script for Urocit? I am trying to get off the Detrol. would like to avoid all drugs I can
<CareOP> night come back ladies! bye!
Cognitive Problems and Sjögren's
