Newbie Intro

[SjoDry]

Hi fellow listmates.

Another newbie has joined the group. I am not "sero/blood test"diagnosed at this point and am
pretty frustrated with docs. I have already observed on this site that I am not the only one who has experienced doctors who only believe positive blood tests to provide/treat one's diagnosis. I am thinking that this may be the norm. Currently, I do not have a Rheumy and am so frustrated, I don't want one. I was just accepted into a study & am willing to drive out of state to speak to physicians who are well versed in SS. I am at a loss (without a huge budget to keep visiting docs) as to how to find a compassionate physician familiar with SS in my local area. Yet, my symptomology (as well as a recent ENT Specialist) are telling me I need to get to a Rheumatologist. I am reading the SS handbook & absorbing all of your great info here to educate myself. Past experience with researching other health issues & walking into a doctor's office, armed with knowledge..has most often resulted in being treated like a hypochondriac/ (Professional patient). In any event, I look forward to getting to know you & learn from you, as well as offering any support that I can. If nothing else, I have a crazy sense of humor & can typically find humor in any situation.      Sandy (aka Sjodry)

[ashley_m90]

SjoDry,
i am 21 and i was diagnosed with sjogrens this year. you are correct in saying that doctors dont understand. i went to 5 different doctors and they all looked at me like im crazy... the all said the same thing "you dont have any inflammation and there are no signs of damage so there is nothing wrong with you." but that didnt explain why on a daily basis i was in so much pain... i have had symptoms since i was a sophmore in high school, i graduated almost 4 years ago and i just now got diagnosed. i know going to a rheumy sounds like you are just going to another doctor, and in some cases its like you are, but i didnt get diagnosed until i went to a rheumy. she was the first person to agknowledge that there was really something wrong. have you gotten blood work dont? specifically an ANA test (Antinuclear Antibody test) it is the main reason i got sent to the rheumy, all of my other testes were normal... you may not like it, but its a start. i dont particularly care for my rheumy and am thinging about switching, but she was able to diagnose me and thats the first step towards being able to deal with this condition... my rheumy has never personally delt with sjogren before so she doesnt exactly know how to go about helping, but she did put me on the basic medication known for helping the pain associated with sjogrens. unfortunately its not helping with the pain. my problem is that i dont have the time to drive clear across sacramento to go see her as much as id like so she can help, i commute to the bay area for school 5 days a week... and driving kills me sometimes, if my joints didnt hurt so much that day,when i get into the car and have to drive 110 miles 1 way, by the time i get to school im in pain... i would definately get an ANA and talk to a rheumy before you actually drive out of state

[Cheryl]

Hi Sandy, and welcome!  Your nickname is clever; I'm sure that you are making a lot of us smile with it. 

I hope participating in the study will lead you to the best doctor for your needs.  Getting a diagnosis is sometimes difficult.  In the meantime, we are glad to meet you and hope that you find help and encouragement here.

Best wishes,
Cheryl

[Patze]

Hi Sandy,

Let me also welcome you to the SJS World and family!  Please do look around the board as there is so much information available that its scary!  I know that I often hang out there as I learn a lot more from the wonderful members than I do from the rheumy (he's a quite type).

I sure do understand tying to deal with a lot of symptoms and no diagnosis so people tend to look at you suspiciously.  I am as I have always been sero negative, and thats a road I wouldn't wish on anyone. 

For the first several years, the rheumy had me listed as having SICCA instead of SJS, and that was okay as my symptoms were being treated (it took a while for me to come to grips with a SICCA only diagnosis).  He finally switched the diagnosis to SJS as new aliments started to pile up and they are most often related to SJS; the treatment is still the same.

I'm glad that you're in the study and maybe they can recommend a local rheumy.  If not, can you contact the SJS Foundation and see if there is an SJS fluent doctor in your area?  If you want, you can mention the general area you are in and maybe a member will have a recommendation or two.

Can you keep us updated about the study?  I'd be curious to see what they have to say.

Again, welcome, and take care of yourself -

Patze

[Joe S.]

Welcome Sandy. I look forward to your other posts.

[Meld256]

Hi Sandy, and Welcome!    (that's a good screen name you have)

I think you'll find great information here you can use on a daily basis, and some friendly, helpful people.

I'm another of those "perfectly healthy" blood test people.  I'm also glad to hear you're taking part in a study, and as Patze says. the docs there may be able to help you find a rheumy.  Or you may be able find any helpful doc whether they are a PCP, internist or other.  The important part, of course, is to find someone to listen to you and treat your symptoms.

Please feel free to ask anything here, jump in and comment and feel welcome.  We look forward to hearing more from you.  We're like a big family here and support and encouragement one another.

Take care,
Melinda

[Duchess]

Welcome!

Hope you'll feel right at home here.


Duchess

[Madison Granny]

Welcome  You've found the right place for information about SJS.  I haven't been on here long and have found out so much more about SJD by reading and asking questions.

[Scottietottie]

Hi Sandy 

Welcome to Sjogren's world. I hope you find the site useful. It's certainly friendly and supportive.

Take care - Scottie