Transcripts

March 5, 2000

How to Co-ordinate your Doctors

<CareOP> Do you have Sjogren's?

<SpringOP> hello Guest2

<Guest1> # Appears as REBECCA

<CareOP> How long U have Sjogren's?

<CareOP> topic for #MSWorld2 "How to co-ordinate your doctors"

<SpringOP> hello Guest1

<CareOP> Guest1 U want to chang your nickname?

<CareOP> Hi, Guest1 welcome. If you wish to change your nick, simply type in /nick and type in your name

<Guest2> I think I am starting to get this. How sdo you get all the colors?

<CareOP> with the IRC program Guest2

<CareOP> Hi Guest3!!!

<SpringOP> did you come in with the web page chat or a program like mIRC?

<CareOP> looks like IRC

<Guest3> hi!

<SpringOP> howdy Guest3!

<Guest2> I used Java chat

<CareOP> Guest3 how u doing tonight?

<Guest3> how are you all?

<CareOP> ok and U?

<Guest3> me, so so!

<SpringOP> in Java chat, there are some colored squares, click on them then type

<CareOP> I'm on daily prednisone again had a flare!

* SpringOP is just fine, thanks you!

<Guest2> I see how ai think

<CareOP> wow Guest2!!!!

<CareOP> Nice!

<SpringOP> great, you did it!

<Guest2> Thanks everyone

<CareOP> Guest2 how long you had Sjogrens?

<Guest1> What is good for eyes at nite?

<CareOP> welcome Guest2!

<CareOP> Hypo tears ointment is good

<CareOP> only a night - greasy!

<CareOP> Hi Guest4!

<Guest2> O tale bo;;berry and nvision essentials and my night vision is inproving.

<CareOP> What was that Guest2?

<CareOP> what r u taking?

<SpringOP> I am using Celluvisc by Allergan for my eyes at night.

<CareOP> my eye can burn at night

<Guest3> i just got my plugs put in and that is helping my vision

<SpringOP> bilberry?

<Guest4> Hi. Just going to lurk and watch the topic.

<CareOP> that's good also Jo - there are lots of good ones on the market - a new gel is out

<CareOP> ok Guest4 that fine!

<Guest2> I take billberry and vision essentaul with lutean for poot night vision and I think is is hesl[ing.

<SpringOP> oh sorry, Good Evening Guest4. lately my fingers are not behaving

<CareOP> lots of doctors for all of you?

<SpringOP> Guest3, was that a surgery ?

<CareOP> I think it is Spring

<SpringOP> that is just fine, Guest4, join in when you feel like it

<CareOP> right Guest3?

<Guest2> My fingers have forgotten how to type.

<Guest3> no, numb the eyes and insert the plugs...very painless

<Guest5> does everyone here have CNS-SS

<CareOP> mine never knew Guest2!

<Guest1> I have had it for 2 mo

<CareOP> yes I do

<SpringOP> hello Guest5, good to see you

<CareOP> what are your symptoms Guest1?

<Guest5> thanks- I'm so glad to be hear

<Guest2> I have MS

<CareOP> u too Guest5- symptoms?

<SpringOP> yes, I have it also Guest5

<Guest5> long story: cog dysfunction, then tremors and tingles

<CareOP> Spring is a possible MS, and me too

<Guest1> dry eyes , dry mouth

<CareOP> yes Guest5 - sounds like me!

<Guest5> finally sever chorea-athetosis, etc "Mixed Movement Disorder"

<Guest2> I have to leave. Hope to see you all soon

<Guest5> Yes!!! someone else like me????

<SpringOP> bye Guest2

<SpringOP> thanks for dropping by

<CareOP> Walking problems? can you descrive them Guest5?

<CareOP> that's right Guest5! :o}

<Guest5> I also have the usual SS: sicca, fatigue, pain, flu-feeling etc

<CareOP> me too Guest5!

<Guest3> i sure have a hard time walking, along with the normal SS stuff

<Guest5> OP - I walk OK. but lots of jerks, twitches, writing, etc

<CareOP> what happens Guest3?

<CareOP> I have balance problems - hands shake of and on also drop everything!

<Guest3> toes drag, incredible weakness, left leg numb-like a line around it

<CareOP> I can't write anymore - it's awful!

<CareOP> Hi Guest!

<CareOP> Guest3 - U R my twin!

<CareOP> left side also - any face pain?

<Guest3> really?!

<CareOP> yes!

<Guest5> OP - In Dec I had trouble w both speaking and writing

<Guest3> no face pain...

<Guest5> hand just wouldn't do what I needed - sort of stuck

<CareOP> Hoo old Guest3? Me 52 started when I turned 45

<Guest3> i slur speeech alot

<CareOP> yep!

<Guest3> me 37

<Guest3> got sick at 26

<CareOP> it's embarassing - my handwriting- is like a 1st grader!

<SpringOP> hello Guest6!

<Guest5> got lost for a second...

<Guest3> i can't seem to find a decent neuro though

<CareOP> yep that can happen Guest5

<CareOP> :o]

<Guest5> OP - you were sayint trouble writing?

<SpringOP> yes, but we are glad you made it back Guest5

<CareOP> its difficult Guest3

<Guest6> Hi everyone!

<Guest5> In Dec I was losing ability to speak and to write

<Guest5> mouth and hand didn't do what was needed - sort of stuck

<SpringOP> how are you this evening, Guest6?

<CareOP> you couldn't talk at all?

<Guest5> OP, what makes you unable to write?

<Guest3> careop, did you say you have dx of MS & SS?

<CareOP> I sometimes have problems pronouncing words and forget words

<Guest6> OK, now that i've finally figured out what I'm doing!

<CareOP> SS for sure, MS possible

<Guest5> Yes, I could, but dysarthric, SLOW, "labored"

<CareOP> they can overlapp according to my neuro

<CareOP> yes - me too Guest5 -

<Guest3> have you had EMG CareOP?

<CareOP> it's amazing!

<Guest5> Oh,yes ro pronouncing and forgetting

<Guest3> I have heard that too, about overlap

<CareOP> Do all of you look good? hee hee?

<Guest5> OP - you have or don't have good neuro?

<CareOP> yep

<SpringOP> Guest3 I have that dx, SS and possible MS. For years it was probably MS

<Guest3> I look great!

<CareOP> lesions look the same on MRI

<CareOP> me too! lol but skinny!

<CareOP> people don't thin U R ill?

<CareOP> think

<Guest5> my MRI was normal - and LP, too.

<Guest3> yes

<Guest6> Anyone have anything show up on their evoked potentials?

<Guest3> i don't "look" sick

<Guest5> anybody else have clinical sx's without OBJECTIVE tests to PROVE it

<Guest3> my MRI is normal too

<SpringOP> not I Guest6....only a slight lag

<CareOP> Guest5 - don't know what happens with writing problems - brain just does not work right!

<CareOP> I had them in 93 - were ok

<Guest5> I looked very weird with the chorea - stared at all the time

<SpringOP> THAT IS WHAT I HAVE. rheumy diagnosed me with all negative lab tests

<Guest5> otherwise don't look sick. Just feel sick

<CareOP> but now - may not be??

<Guest3> I am frustrated that my EMG was normal

<SpringOP> hey, Guest7, good to see you again

<CareOP> Really Guest5 - is it like Parkensons?

<Guest5> Spring - your labs are normal?

<CareOP> Hi Guest7!

<SpringOP> yes, they were. but my symptoms all added up together made a good case of it for her

<Guest6> Hi Guest7!

<Guest7> Hi! I forgot about you last week and couldn't remember how to get back!

<Guest5> well, Parkinson's is a HYPOkinesia and Chorea is a HYPERkinesia

<CareOP> anyone have the Anti_La or Anti-Ro?

<SpringOP> the rheumy has no doubt.

<CareOP> ah hyper

<Guest5> I am dx's with chorea - so I guess not like PD

<Guest7> I have AntiLa

<Guest6> Anybody in this room bothered by tremors?

<Guest3> i do-positive for both, CareOP

<CareOP> I tend to be hyperactive - anyone else?

<CareOP> yes a bit

<Guest5> HOWEVER, sometimes I'd get sort of stuck in a writing movement or dystonia and couldn't do waht was needed

<Guest7> used to be

<CareOP> I am only ANA ans RA positive

<CareOP> Really Guest7 - but not anymore?

<SpringOP> I have some of that Guest6, when I get over heated and overworked.

<Guest6> I was first diagnosed with sjogrens 5 years ago. Only ANA & rhuematoid positive.

<Guest7> Now I am a sleeper :)

<CareOP> Anyone here have MRI of brain done?

<CareOP> me too Guest6

<Guest5> neg MRI findings, seronegative except for low pos ANA

<CareOP> I was diagnosed in 97

<Guest7> No, I had a Cat scan though

<Guest3> my MRI is normal-brain is there they say!

<Guest6> Since then, I was told that I have CREST (scleroderma), and now possible MS.

<CareOP> How did they diagnose U Guest5?

<Guest5> Srch - yes. thats's what they tell me

<Guest5> SS dx by sx's and by Schrimer's test and lip biopsy

<CareOP> I worry about scleroderma for me - does it come before Sjogrens?

<SpringOP> hello Guest8, welcome to Sjogren's world chat

<Guest5> neuro by clinical presentation, but I have been having a hard time iwth neurologists'

<Guest6> I had signs of raynauds before they dx of sjogrens & scleroderma.

<CareOP> tell me about it Guest5?

<Guest5> and rheumy is reluctant to treat more aggressively w/o neuro saying it is autoimmune disease'

<CareOP> what was that like Guest6?

<Guest5> Yes - I have Raynaud's,too

<SpringOP> my brain has a few lesions in the white matter, that is all

<Guest8> Does everyone here have cns involvement?

<CareOP> yes Guest5 sounds familiar

<CareOP> I do

<Guest3> my rhumie just shut down my treatment because i don't have a neuro

<CareOP> eeks Guest3!

<Guest7> I am having a hard time with getting this whole ting under control-both the MD's and the Sjogrens!!!!

<Guest5> Or dear Guest3

<Guest5> Yes I have big problem w CNS

<CareOP> yes too many doctors can cause problems

<SpringOP> bummer Guest5, you need to get help...don't you think the doctors couls confer or something?

<CareOP> all want to do sometning different

<Guest8> Does everyone carry the ssa and ssb antibodies?

<Guest6> I asked my neuro if a person can have scleroderma & ms at the same time - he said "why not?"

<CareOP> not yet

<CareOP> only ANA

<SpringOP> wHAT? Guest3

<Guest3> i do Guest8

<Guest5> I - almost by accident - have good tx right now fro my cns probs - but no tx plan so it leaves me worried

<Guest6> They are both from the immune system attacking itself.

<Guest3> positive SS-A, SS-b

<SpringOP> Guest8, I do not and I do not think you do unless that is the part of the body that is affected

<CareOP> what drugs are you on Guest5?

<Guest7> Positive SSb ( La)

<Guest5> I was neg for antibodies last tested in Jan, 99

<Guest8> I only carry the ssa antibody my dr. is calling it ana negative lupus and vasculitis

<Guest6> Is anyone taking any injections?

<CareOP> ther is a new test out to find antibodies to nerve cells - in Europe - maybe here

<Guest7> none here

<CareOP> called anti-fodrin

<Guest5> seems like my rheumy should tak another look at my blood one of thesese days

<Guest7> I thought having neuropathy was a sign of Sjo in the peripheral nerves.

<Guest8> does anyone take cytoxan?

<CareOP> I carry all my test reports from on doctor to another

<CareOP> no - prednisone for me

<Guest7> I am on Methotrexate

<CareOP> it can be Suu but it sometiomes is in the brain and spinal cord also

<Guest3> do any of you have pain?

<Guest6> My neuro said that I don't have a neuropathy - the problem is in my brain or spinal cord. Sound familiar?

<SpringOP> how are you handling that Guest7, ok?

<Guest5> a movement disorders neuro - who also tested me for Huntington's Disease - suggested doxycyline since there are lost of weird ricketsias out there that can cause neuro problems

<CareOP> Is it helping Guest7? My mom takes that

<CareOP> yes Guest6 it can be that way

<Guest5> miraculous improvement on doxy - then worse off it - now WAY better on it

<Guest7> It is helping my joints and skin a lot

<CareOP> On what Guest5?

<Guest5> the added a little bit of clonazepam and the jerking and tics stopped too

<CareOP> I have heard of other taking doxycycline

<Guest8> Sorry to ask so many questions I'm just so happy to talk with people going to the same thing. My sed rate is also very high is that normal for sjorens

<Guest5> Now I just feel good old sick, tired and DRY all the time!!!

<CareOP> thats what we are here for Guest8! :o]

<Guest7> It is not helping with the fact that I already got multiple infections which is from some unknown cause and Metho may be making that part worse

<SpringOP> I see my neuro in a week, firs ttime to see her since the rheumy she sent me to dxed the SS

<Guest1> Have to leave now thanks folks!

<CareOP> Guest5 - I am just coming out of a flare like that =prednisone daily is what helps me in a flare

<CareOP> yes Guest7 - it is possible - how large a dose Guest7?

<Guest7> How long does your flare last?

<Guest5> Care - pred reduces your neuro sx's?

<SpringOP> bye Guest1, come back next week!

<Guest5> High dose pulse? or oral pred?

<CareOP> last one was for 6 weeks

<Guest7> I take 10 mg, but just got back from MD and it will now be 15mg

<CareOP> oral pred - on it since 1995

<Guest5> what's your tx protocol?

<CareOP> what Guest5?

<Guest5> Guest7 and Care - pred reduces neuro sx's, or other SS sxs, both?

<SpringOP> someone asked about pain, I have pain, in feet, and in hips and knees but not conctantly, except the right foot. And at times my legs ache like the dickens as in flu or something. Don't know how many times I have checked my temperature, hahaha.

<Guest7> My doctor offered a trial of pred but I was worried to try-diabetes etc

<CareOP> pain for me and neuro problems - 10mg pred alt days

<Guest5> Care - wondering what doses and length of treatment your docs use for CNS-SS with pred

<CareOP> I also take Neurontin, Pamelor and Cylert

<Guest6> Question, please. Has anyone lost their ability to walk?

<CareOP> as low as possible!

<CareOP> very cautious

<Guest3> does neurontin help you?

<CareOP> not totally

<CareOP> sure does!

<Guest3> not totally

<Guest5> What does the neurontin do for you???

<CareOP> had one year couldn't walk without help

<SpringOP> what is the Pamelor for?

<CareOP> lessens pain - neurological pain

<Guest7> Is that from Sjo CareOP?

<Guest6> Due to weakness, or what?

<CareOP> pain

<Guest3> I just started Mexiletine...like Neurontin. Seems to help

<SpringOP> no Guest6, have you?

<CareOP> balance mostly

<Guest5> side effects from neurontin?

<Guest8> I had about 3 months needed help with working

<CareOP> first 2 weeks feel drugges

<Guest3> weakness and pain, some balance too

<CareOP> after that feel great!

<Guest5> any body have a neurologist tell you to see a psychiatrist?

<CareOP> body adjusta

<Guest8> Does everyone still work?

<CareOP> no

<Guest6> Very close to it. Cannot feel my left leg. Balance is bad.

<CareOP> no work

<Guest6> have fallen a couple of times.

<Guest7> Work one day/week

<Guest3> i quit work 4-98

<Guest5> tell you that your syxmptoms "wax and wane" and therefore can't be "organic"?

<CareOP> Guest6 - left side the worse for you?

<CareOP> I would chang doctors Guest5!

<Guest5> I work a very little bit - and have kids at home...

<Guest6> As far as the weakness. Tremors are on both sides.

<Guest8> Are you on disability? How hard is it to get?

<CareOP> I have 4 kids too!

<Guest5> MY LEFT SIDE IS WORSE

<SpringOP> alost Guest5, but not quite in definite words, but he was suggestive of it so I found a new neuro

<Guest5> more tingling and weirdness

<CareOP> EEKS!

<CareOP> I couldn't work

<Guest5> mine are 17, 13, 8 and 6...yours?

<Guest3> it took me until 10-99 to get SSDI

<Guest6> Anyone having vision problems?

<CareOP> but have been a stay at home mom forervr!

<CareOP> yes

<CareOP> bright light hurts and blurred vision

<Guest7> Bright lights, burning, pre glaucoma

<Guest8> I'm having problems with my right eye

<Guest5> I have not been able to read normally for over a year. My eyes jerk and I can't stay on the right place on the page

<CareOP> mine 24,22,21,17

<CareOP> older

<CareOP> Guest5 how old R U? I'm 52

<Guest5> sort of the same as the rest of my body but in the eye muscles

<Guest5> the clonazepam and doxy have helped that dramatically, too

<SpringOP> bruight lights amd burning, blurring when hot for me, and I DO have glaucoma, Guest7.

<CareOP> Spring did you see pre glacoma with Guest7???

<Guest5> hate bright lights - and the dryness is a problem

<CareOP> ok

<Guest5> I'm 44

<SpringOP> yes, that is why I wrote that

<Guest3> me too Guest5

<CareOP> :o]

<Guest7> Did your mother have glaucoma?

<Guest7> My grandmother did also

<CareOP> anyone have signs of optic neuritis?

<Guest7> What are the signs of optic neuritis?

<SpringOP> My Grandfather got Glaucoma in his 40's as did I. and my Dad has it.

<Guest6> possibly. visual evoked potentials were a little "off".

<CareOP> well the opthamologist see a problim with the optic nerve - cupping and pallor for me

<Guest5> mother and g'mother had glaucama - not me yet

<Guest7> Spring- did anyone else in your family have autoimmune diseases too?

<Guest3> does he have to dialate the eye to see that?

<CareOP> that's interesting with the glacuoma

<CareOP> yes

<CareOP> I have had mild optic neuritis in my left eye

<Guest5> anyone have tips on finding a neurologist who is aware of CNS SS???

<Guest3> what does it mean when your eyes "jump" when following

<SpringOP> the grandfather was my Mom's side. some problems in family, not huge ones.

<CareOP> go to a LARGE teaching hospital

<CareOP> where do U live?

<Guest6> Is there any way for a neuro to differentiate between Sjogrens & MS?

<CareOP> it's difficult Guest6

<Guest7> How about a lip biopsy?

<CareOP> can take years to know for sure

<Guest5> OP - yeah, I did. Can't say they were good. If they couldn't see it in blood or on MRI it doesn't exist

<Guest6> haven't had one.

<Guest5> JOhns Hopkins, even. Sigh

<SpringOP> I have cupping and pallor, both eyes, but there is cipping and cupping, roflol. Had Glaucoma surgery in Oct. the filtration surgery. now that eye is especially dry

<CareOP> had it in 94 - was ok them

<Guest7> That is diagnostic for Sjo I understand

<Guest5> Actually, it was at Univ of Rochester that the Mov Dis guy suggested doxy

<CareOP> really Guest5?

<Guest5> God Bless him.

<Guest7> Spring what is cupping and pallor?

<CareOP> really Guest5 - does it help?

<CareOP> Guest5 U went to John's Hopkins?

<Guest8> Does anyone have stabbing pains in their head?

<Guest5> the doxy and a little clonazepam have close to stopped my movement dis and greatly improved my cognition

<SpringOP> the nerve bundle in the eye, where it comes into the eye, should be a nice rosy disk. Cupping is when it gets pushed in by eye pressure

<Guest3> well, gotta go. Can't sit here any longer! You guys take care!

<Guest7> I never knew I had unusual dry eyes except for problems with contacts before my diagnosis

<CareOP> ladies read the articles at Sjogren's World - you will see it can be diagnosed without all those positive tests

<Guest5> my other SS sx's are the same - take plaquenil for the past year - also vioxx

<CareOP> Bye Guest3!

<CareOP> runs in the family huh?

<Guest7> There are some articles about CNS Sjogrens- I told my Rheum about them and he said it is not that common

<CareOP> Guest8? You still here dear?

<SpringOP> Guest5, Vioxx sure helps my pain, but I get swelling when I take it, does it make your legs and feet swell?

<Guest5> Yes. Excellent rheumy at Johns Hopkins - I didn't like her, but she sure got it right

<Guest8> Yes

<CareOP> who was it Guest5?

<Guest5> My rheumy at home referred me because of comlicationsin my case

<CareOP> my sister lives near there

<Guest5> I got a "pot luck" neurologist at JH - at first I thought he was terrific, but I was ultimately very disappointed

<Guest5> I think he need sto read the Sjogren's World articles.

<Guest7> Sometimes I think they get tired of seeing us!

<CareOP> well my neuro is not especially popular, but I love him! He sure helped me when no one else could or would.

<Guest7> I think it is easier to have a pat diagnosis like migraines

<SpringOP> I am taking them to my neuro next week, I have been thinking of mailing them to her first, but maybe I will wait to see what she says and then hand them to her

<Guest5> I am JUST LIKE what is described and it is for those exact reason that they ended up telling me that I don't have a neurological disease!!!

<CareOP> Ha Guest5!!!

<CareOP> Right Guest7!

<SpringOP> well, so how many of you have migraine troubles? I sure do.

<CareOP> I see my PCP Tuesday, then try to find a Rheumy here, see an opthamologist.... UGH!

<CareOP> I have bad headaches - but don't know it they are migraine

<SpringOP> Guest5, does Vioxx make your legs and feet swell?

<Guest5> The JH rheumy is world famous SLE person - Michelle Petri

<CareOP> my biggest pain is sciatic nerve pain! butt pain!

<Guest7> I get ocular migraines and usd to get PMS migraines but now I just get horrible pain starting at base of neck wen glands well

<SpringOP> you would know Care, they are something else

<Guest8> I have stabbing pains in my head

<CareOP> wow - I have read of Elaine Alexander there Guest5

<Guest5> I think I'd like to see SS or SS/SLE overlap syndrome doctors

<CareOP> back of neck Guest7?

<Guest7> I don't think they are migraines, Cat showed areas of inflammation, but neuro said it is migraines with out every checking the swelling.

<Guest5> I'm fine on the vioxx. I don't know for sure if it helps -how sould i feel if ididn't take ite every day?

<Guest5> but no negative side effects

<CareOP> is it eye pain Guest7?

<Guest7> Base of skull actuall

<SpringOP> thanks Guest5

<CareOP> My neck and right arm have been hurting a lot lately

<Guest5> Yes - I've read her work (alexander) = she

<SpringOP> Guest7, my headaches start at the base of the skull and then wrap up and around and into the eye, usually left one

<Guest5> s been kinda controversial in the medical literature

<CareOP> left eye pain - yep!

<Guest8> right eye pain

<Guest7> Same here- over top of heap some times but sometimes just stop mid head...:)

<CareOP> I know Guest5 - some doctors don't thin CNS-SS exists

<Guest5> curious that nobody at JH mentioned Alexander to me...

<Guest5> I've always wondered why not...

<CareOP> gee she is very well known

<SpringOP> right Guest7, we do sound like we have similar collection of symptoms

<CareOP> are we all nuts!!!! ha ha ha!

<CareOP> been accused of that?

<Guest5> Maybe the rheumy and neuro that I saw there don't agree w her

<Guest7> How old are you Spring Op?

<CareOP> I don't know Guest7

<Guest5> Also, when I saw Dr. Petri (rheumy) I wasn't neuro yet

<SpringOP> maybe so Guest5

<Guest5> Not badly, just cog dys

<SpringOP> 48 for another month

<Guest5> altho I thought that was bad then. HA!

<CareOP> the BIG 50!!!!!!!!!!!!!!!!!!!!!!!!!!

<CareOP> oops can't add either! lol!

<SpringOP> I will be 49 April 18, hehe, and yeah, I can be evil, hahaha

<CareOP> 49 sorry youthfull Spring! :o]

<Guest8> 35 here

<Guest5> 44

<CareOP> eeks - I'm ancient! ha!!!

<Guest6> 41.

<CareOP> 52

<SpringOP> roflol

<Guest5> So - how about balancing these docs??

<Guest5> I've been in the middle of them for so long it makes me crazy

<CareOP> well I take all my records with me

<Guest5> I'm trying to do more asking them to send letters to each other

<CareOP> It can be awfull!

<CareOP> mine do

<Guest5> or call each other (altho that's hard to really get done)

<CareOP> they should Guest5

<SpringOP> I do notknow how Guest5, but my rheumy, where I was sent by neuro, called the neuro and left message, neuro tried back 2 times and gave up.

<Guest5> so that THEY have some responsibility to coordinate my care

<Guest5> instead of ALL ON ME when I"M SICK~!

<CareOP> letters are the best

<Guest7> I find it hard to have two feet of chart work that they look at for one minute and then seem to answer so feew questions or forget to give me results.

<Guest8> I just spent about a half hour crying because I don't think they have a clue

<CareOP> get your records girls_I have mine

<SpringOP> so that leaves me witha dx of pos SS, but not sure if it is primary SS or secondary to MS.

<CareOP> primary Spring - I bet!

<CareOP> welcome I have cried lots too - still do!

* SpringOP has done that too Guest8, it is so frustrating!

<Guest5> Yes - I try to keep all my records organized and together

<CareOP> it is up to us I have found

<Guest5> but part of my bad experiences have come from the docs who take a quick glance and ignore everything that's been done

<Guest7> I cry about it but peanut m&m's do help too

<SpringOP> lately,I have been collecting copies of my records from all doctors, and zeroxing them and giving copies to the other doctors, what they will no do, I will

<Guest5> LOL< Guest7

<CareOP> good girl Guest5 We must take charge! Really

<SpringOP> RIGHT Guest5

<Guest5> I get so I don't know which docs have which records...or test results or whatever

<Guest7> I have my records- the chart is literally five inches thick

<Guest7> Take tylenol then eat candy....

<Guest8> I'm suppose to go to another dr. for an second opinion on meds and I'm afraid he'll think that I'm a nut or something

<CareOP> ha!

<SpringOP> 5 inches!

<Guest6> Thanks for letting me hang out with you tonight. Gotta go!

<SpringOP> roflol at Guest7.

<CareOP> bye Guest6!

<Guest5> I regularly see my PCP, rheumy, neuro, cardiologist, ENT (I have a sensori-neural hearing loss iwth the CNS SS), etc

<SpringOP> how about chocolate covered tylenol?

<Guest6> Bye everyone!

<SpringOP> bye Guest6

<CareOP> sounds good to me Spring!

<CareOP> Guest5 - the hearing loss -how did it happen?

<CareOP> Guest5 why cardiologist?

<Guest7> I have valve damage

<Guest8> I have a roaring noise in my ear. I was wondering whats that from.

<CareOP> Mitral Valve?

<Guest5> Last spring I had a lot of tinnitus (ringing in ears) - so they stopped plaquenil for 2 mo, but ringing didn't change so back on

<SpringOP> how long have you all had shogren's or dx of it?

<Guest7> I get it from the glands that swell in front of my ears sometimes

<CareOP> oh gee Guest8 - me too! constant ringing in left ear!

<Guest5> ENT tested hearing in April - all was normal

<Guest7> careop- mitral, aortic tricuspid (Redux)

<Guest5> Just happened to read a report of JH neuro from Oct that said decreased hearing on that finger rubbing thing they dy

<CareOP> Right - U get the roaring sound Guest5?

<Guest5> so I mentioned it to ENT in DEC when I was seeing him

<SpringOP> what idd he say>

<Guest5> retested hearing and i had lost 30 to 35 db'sin both ears - low frequency

<Guest7> Is it from fluid buildup?

<CareOP> I think I might have problems also - cna't hear hubbys low voice

<Guest5> since doxy I have gotten 10 db's back in my right ear!

<CareOP> what dose doxycycline?

<Guest7> What dose Doxy and how long?

<CareOP> right???

<SpringOP> hmm, I had an incident of hearing loss for 2 days 2 years ago. it was strange, just in left ear, no cold or illness or congestion or anything

<Guest7> Did yo have ear infection or are you treating glands Guest5

<CareOP> yes Spring - sounds like SjS stuff

<SpringOP> now Careop, that could be selective hearing, right?

<CareOP> ha!

<Guest5> not from fluid. Nerve problem - he says either acoustic nerve or brain "gray matter" from pattern of loss

<SpringOP> that is good Guest5

<CareOP> U said it Spring! lol!

<Guest7> Why did he subscribe doxy?

<Guest5> cardiologist because I have an implanted cardioverter defibrillator (ICD)

<CareOP> how did they diagnose that Guest5?

<Guest5> arrhythmia began before SS

<CareOP> problems with heart rhythm?

<Guest5> PROBABLY not related - but then who really knows?

<CareOP> Well my heart gos "nuts" off and on - scares me!

<Guest5> yes heart rhythm that is associated with high rates of sudden death

<Guest5> thus ICD

<Guest5> but my heart

<CareOP> how did it start?

<CareOP> eeks!

<Guest5> has behaved perfectly since getting ICD Jan 98

<Guest5> Used to be very athletic - passed out a couple of times exercising.

<Guest7> I don't need anymore parts to be broken here!

<Guest5> ECG shows dangerous rhythm...

<CareOP> me either Guest7!!! lol!

<Guest7> I am definitely ot athletis, so I am safe there

<CareOP> ok well my last one was ok! Thank Goodness!

<Guest7> I can't seem to spell anymore either

<CareOP> ah gee Guest7 - me too!

<CareOP> or talk either!

<Guest5> My ICD is a piece of cake compared to CTD, SS, especially CNS

<CareOP> CTD???

<Guest5> BUT - if you are worried about "heart feelings" absolutely get it checked out

<Guest7> I used to talk more, but my kids think I am becoming a computergeek

<CareOP> I have - Valve problem

<Guest8> My skin has become so dryespecially my feet and I have gotten red dots on the bottom of them

<Guest5> have a Holter monitor done - mine showed up on and "event monitor"

<Guest5> your docs will know what those are

<CareOP> AH Guest7 me too! lol!

<Guest5> no point in being scared

<SpringOP> red dots I have red dots on my stomach and upper legs, and chest

<SpringOP> tiny red dots

<CareOP> I don't think I want to know! lol!

<Guest5> we all can have "benign" rhythm changes that cause weird feelings but are not dangerous

<Guest7> I have dots also

<Guest5> I get them all the time....

<SpringOP> good point Guest5

<Guest5> But why worry? We don't need any extra worries

<CareOP> yes - arrythema - but mine are more frequest in flares

<CareOP> yes Guest5 - just live each days as it comes

<Guest8> Sometime steroids can increase heart rate. I take meds for it

<CareOP> I'm dotless - just brainless!

<Guest7> Interesting I retain fluid in flares and can feel my chest pound

<CareOP> even 10mg every other day?

<CareOP> Hi Guest!

<CareOP> mine does too Guest7 - more forcefull and faster

<Guest5> Care - dotless, just brainless. ROFLOL!!!

<SpringOP> I had sever itching neck, face, chest for several months worse at times and then not too bad. I now use a creanm instead of a lotion and it seems to have calmed down and left, thanks goodness

<CareOP> :o]

<CareOP> what crean Spring?

<Guest7> Careop- does it hurt down arms

<CareOP> no

<Guest5> any body ever use "Bag Balm" on their skin

<Guest5> It literally "save my hide"!

<Guest8> What about the dryness. Lotion doesn't help

<CareOP> my right arm aches - upper arm

<Guest7> For lotion try Vaselind Intensive Care

<SpringOP> Curel Therapeutic Moisturizing cream, no fragraces

<Guest5> Bag Balm is made for farmer to use on cows udders

<CareOP> Bag Balm really?

<Guest5> It's lanolin, petrolatum and something antibacterial

<CareOP> yes heard of it!

<Guest5> the stuff is GREAT

<CareOP> really? will get some

<Guest7> I think it is kind of think and conjures up icky images so I don't use it

<CareOP> what about very dry face?

<Guest5> I also like Curel unscented

<SpringOP> lol Guest5, my uncle told me to ues that, I used to use ot for sunburn years and years ago

<Guest5> But Bag Balm is a nuclear weapon compared to Curel as a handgun

<Guest5> no comparison

<Guest7> I use Clarins on my face

<CareOP> ha Guest5!

<SpringOP> Guest8, read up what I take for dry skin, it makes a tremendous difference, the cream, I use it after every shower

<CareOP> I ues Clinique - can't stand anything scented

<Guest7> Well the Sporanos are on I must go

<SpringOP> yes Guest5, that is what I use

<Guest7> that's Sopranos

<CareOP> Bye Guest7!

<Guest7> BYE!

<Guest8> thanks

<CareOP> all these creams??? I

<CareOP> ll slip away!!!

<CareOP> I'll slip away!

<Guest5> thanks so much - glad to have found other CNS SS folks. I feel like my SS is hard for those without the CNS part to understand

<CareOP> best for face? Anyone have Roschea?

<Guest5> I hope to come back next week

<Guest5> take care, all

<SpringOP> try bag balm Care, roflol

<SpringOP> bye Guest5

<CareOP> please do!

<SpringOP> see ya next week

<CareOP> right Spring - and look like an OLD BAG??????????????? LOL!

<Guest8> bye Guest5

<SpringOP> i use the curel on my face too, but it is a bit thick

<CareOP> byeeeeeeeeee Guest5eeeeeeeeeee!

<CareOP> Roschea anyone??

<SpringOP> the idea is, you'll looklike a young bag, hahahah

<CareOP> yucky face with grease!

<CareOP> ha! a Coach Bag I hope!!!

<CareOP> :o]

<SpringOP> the dermatologist told me that is what I might have on my neck/shoulders, the Rosacea

<CareOP> I read it's common in Sjogrens

<Guest8> I'm going now. Thanks so much. I'll see you'll next Sunday

<CareOP> The SSF book says that

<SpringOP> bye Guest8. so good to meet you

<CareOP> Bye take care and see you soon

<CareOP> well daughter needs computer for homework!

<SpringOP> and when I get hot, my face is sooo blotchy

<CareOP> bye till next week!

<SpringOP> I guess that is one more reason, that the rheumy dxed me. alll those thing sasdded up

<CareOP> me too Spring - wash it then a red butterfly appears!

<CareOP> gotta go!

<SpringOP> bye!

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Sjogren's Syndrome...

is a chronic, slowly progressive autoimmune disease that affects the "exocrine" (moisture producing) glands of the body.

It is classified as a "connective tissue disease."

Sjogren's Syndrome causes dry eyes, dry mouth, and it can also affect other major organ systems. Uncommonly, it can affect the central nervous system. Read more here.