View Full Version : Aggrevated and worried.

03-08-2011, 02:29 PM
For the last year ive had different rhuematologists tell me i dont have lupus and then i get to NY and they say yes. I also have had a recent ultrasound on my kidneys because of a urine analysis i had. Not only are my kidneys are fine but now they tell me i have a quite enlarged Spleen.AWESOME they said i need to see a rheumatologist as soon as possible. I have no idea on what they are going to do and i am worried.

03-08-2011, 02:45 PM
first of all - WELCOME. I also live on LI - Are you Nassau or Suffolk Co?

secondly - you are so not alone in the diagnostic limbo game. Many of us have been told yes it's Lupus on one day and no it's not on the next. It gets so you kind of feel like a human volley ball being tossed around.

This is a great site and you came to the right place for support and reassurance. Try not to get too worried yet because that isn't going to help you much at the moment. Focus more on what steps you need to take next and ALWAYS keep track of all the documents with tests done and results and doctor's notes. That'll just save you a lot of time later on.

03-08-2011, 02:47 PM
I live in farmingdale

03-08-2011, 03:02 PM
me too. if you ever want to meet up for coffee PM me. *smiley face*

03-08-2011, 05:12 PM
thank you :)

03-08-2011, 08:04 PM
hi kaleigh,

so frustrated....i just wrote this nice message, and poof, it was gone....so, i will try again.

first, welcome to a wonderful site. i joined shortly after i was diagnosed, and i will honestly tell you that this is where i learned the most about lupus, and this is where i found the strength to stand up for myself.

ask your primary care dr. to recommend a rheumatologist that he would want his mother or sister to see.

when you go in for your visit, they will take several vials of blood, then the dr. will ask you several questions. You might want to consider taking a family member with you to help you remember your medical history. a lupus diagnosis is combined of both lab results and symptoms (referred to as criteria). I recommend that you read some of the threads here at the site....there are several that address the many symptoms that accompany various auto immune diseases. Then, start a list of your symptoms and take this with you to your drs. visit. It is often hard to remember things when you are nervous about seeing a new dr.

It is ok to be afraid, you are going through a lot now, and this is a very scary time. Just know that we are here to help you, so please come and ask us any questions.

03-08-2011, 08:20 PM
ive been to a great rheumatologist in Washington state but then we moved and i havent found one since that i like

03-08-2011, 11:03 PM
Hi Kaleigh! I am so glad that you found us and decided to join. The doctor merry go round is the hardest part of this whole thing! Too often the doctors what to see all the criteria met at once which is completely wrong! A diagnosis of lupus is made when 4 of the criteria have been met either at once or over a period of time. Let's say today you have a positive ANA with a high titer count but next time you have blood taken it is normal but you have a malar rash and your ds dna is positive. Your doctor will now add the rash and the DS DNA to the Positive ANA from the previous blood work. Now that leaves you with 3 of the criteria met. A doctor that understands AI issues will understand that Lupus and other AI diseases are diagnosed on a cumulative scare not on a single day or labs.

That was a long post to simply say that you new doc may see "the big picture" where the others have not. Anyway, good luck on finding the new rheumy!