Well I went to the rheumy today, and must say, I left there feeling discouraged. My swelling was noticeable to he doc, along with my joint issues, but he doesn't think it is RA. He thinks that if I had RA, I would have more joint damage than I do. He doesn't know what is wrong. I am scheduled for a bone scan on 10/18. After that apponitment, I am to start taking Plantix(?). I had more labs drawn today- the results will be in in 24 hours. I honestly could just cry right now because I thought relief was in sight, but now I'm not sure. I have all the classic symptoms of RA- my primary feels I have this, so why can't I get a dx? Another 3 weeks of misery ahead of me......EDIT** medication is Planquil 400 mgI've had RA since I was 18 months old. (okay, JRA, but still) I always had swelling and visible signs, but I barely have any bone damage. I don't know why your Dr thought that....maybe we're rare..I'm honestly not sure. I have *some* damage. I know my right knee looks bizarre and my left wrist has at least two bones fused, but everything else always looks good. But I swell everywhere. So I'm not sure of the link...If your lab work doesn't show anything (and so you know, mine NEVER has) I'd ask for a second opinion. Especially if your primary thinks thats what it is. My mom took me to at least 5 different JRA specialists before one of them went "oh...well...she does have it" AND HE WASN'T EVEN MY DR! haha He was visiting the ER that day. So....there ya go...lol good luck, and keep your chin up. Everything in life is bearable. You just have to want to live hard enough. :)Panz~ check out the "New Here? Useful links and information"
section of the message board. Lovie posted the criteria for
diagnosis of RA.
I have JRA like Katie, little joint damage, RA has NEVER
shown up in bloodwork, but I got the diagnosis after exam and
x-rays showed soft tissue swelling, pain, and stiffness. I know it
is frustrating waiting for a diagnosis. You know that something
is wrong, and don't stop until you get answers. Good luck!Yeah, it was a nightmare for us. One of the dr's even called child protective services on my mother!!!! They thought for SURE she was doing something to me, to make me swell, or that she wasn't watching me, and I was falling somewhere! Can you BELIEVE that??? I was only crawling when my mom first started noticing it. At 18 months, my primary did his own diagnosis, and did bloodwork and EVERYTHING, and he was still convinced thats what it was, they wouldn't put it on the books until that last Dr saw me, and by that time I was amost THREE. :| Thank god for my primary.... by 4 I was in leg splints and a wrist brace and illegally on ibu. Hah. But it worked! can't knock em for it. Just keep up the questions, eventually you'll get the answer you need!
Panz -
He might just be being cautious. He put you on plaquenil and that's a DMARD used for RA and he's scheduling a bone scan too! These are all positive moves forward. He did blood work too....most RD's will not say you have RA by just looking at you and hearing your symptoms - but he's moving forward to get you a definate diagnosis.
I'd feel good about your appointment! I know it can be a let down to not have a "name" for your problems when you walk out of the RD's office...and I'm sure you had to wait a long time to see him...but RA is a very serious diagnosis. I think he's doing right by you. And he did give you plaquenil - without a diagnosis...RD's are weird...they don't like to label a disease unless they are sure.
I think you had a great visit - he's doing tests, and trying to get to the bottom of your problems.
Trixie
There is truth in what Trixie is saying. One reason doctors are hesitatant at putting the diagnosis down is that it immediately puts you down as having a pre-existing condition that can keep you from getting health insurance in the future. Plus, all these meds are really strong with some nasty side effects.
The other problem is that rarely does a blood test or a physical exam give the doctor enough info to make the diagnosis. With 100 different types of arthritis, the doctor must take some care.
What you have to do is call every time there is a problem or new development. If you don't make them aware of how much you are affected and how you are affected, they may not get a clear picture of how sick you are.
I still look pretty normal. My blood work often comes back normal. But I am very sick and non-functional in many ways.
So, don't be discouraged as this does take time. If you are in pain, say so. Some people keep daily logs of their symptoms. Many times, I have come into the office with a list of my current problems. And, don't be afraid to go into the doctor between regularly scheduled appointments if you are feeling worse. And do call the nurse if something isn't right. This is will help you get your diagnosis and consquently, your treatment sooner.
I agree too. Sometimes it takes a while to get a dx but you don't want them to label you with it if it is in fact something else.
Trixie is right about Plaquinel. It was the second DMARD I was on after Sulfersalizine lost it's effect with me. If you do have RA over several months time this could very well help you.
I didn't have the postive blood work; but I did have early signs of erriosions and lots of other symptoms that helped me to get a quick dx......but at the same time I think my orginal RD called it RA a lot sooner than many do.
I know you're frustrated. Hang in there. Start the meds and keep an eye on your symptoms. A journal isn't a bad idea for someone in your situation. Give it a try.
Good Luck.
Me too. He sounds very good. He has started treatment. But he is not going to stick a horrid lifetime label on you til he is sure. I went around with the label inflamatory joint disease for some years in the beginning. After the treatment begins to work... a name for the miserable beast is less important..because you can be treated and get relief without a lifer label.