1 year tomorrow | Arthritis Information

Well tomorrow marks one year since my onset.
A couple nights ago I found out I'm actually sero-negative and have been all along.
I didn't know this because I'm on my 2nd doctor and only started getting my blood results sent home when I started seeing him. My first doctor was a jerk and I was too sick to even think about requesting a copy for myself.
I thought she said at one point the tests are finally showing a low positive for RF along with the severe inflammation. However this doctor says he has all my records and I was never positive. My RF just came back as 9. My Anti CCP was negative. I had borderline positives for ANA and RNP.
I said gee- can we say I definitely have RA then. He said no!
I kind of feel confused and dangling again.
He said he doesn't want to change my course of treatment because it has worked so well for me.
My little mind says....hmmmm but maybe I don't have RA and I don't need these toxic drugs. What do I have? What else might I take? Maybe I don't need any meds at all. Am I not treating something else that needs different drugs and am I putting myself at risk for not treating it?
Could it be something completely non arthritis related?
I don't think I'm ever going to understand this disease or be able to come to terms with it.
Wow. So much of what you just said is exactly what I am thinking! 8 months ago is when I started having symptoms. My doctor won't give me a diagnosis yet, I'm currently not on any meds, but some of my blood work came back positive. Some days I feel almost "normal" but most I don't. But I often wonder if it's my imagination. Maybe its something else, and so on.

I do go back tomorrow (because I moved up my appointment because I flet so bad last week) and I'm really hoping for a diagnosis or more tests or something.

It's nice to know that I'm not the only one who feels confused about this stuff!

You're not alone with the strange lab results. Mine are nearly the same. Seronegative, anti-CCP and ANA negative. My white cell count has been as high as 40,000 this year which lead my rd to think that I may have Still's Disease instead of JRA (or whatever it's called now) By the way, I've mentioned here my high pred dose. Apparently, in Still's disease the pred dose is determined by body weight which is why I got so much of it.

Still's is pretty much like RA, but has some different characteristic symptoms like the wbc thing to name one. So, while you may not have RA, you may have another form such as Still's. The doc just needs to keep digging to find out what but in the end most are treated just the same.

Bob H.

First of all- welcome to the board Hayley!

I thought I had my answers - but now I'm confused again.
I had a severe onset and my dx was also based on red, hot joints, all joints were affected symmetrically with severe pain. Several had extreme swelling. I was really bad for 2 1/2 months like that and then I turned around as suddenly and got to be almost normal. My blood tests have been remission like ever since. I still have pain in my wrists, hands, ankles & feet mostly. However I don't take pain meds for it.
It sure sounded like RA but now I just don't know.

Good luck tomorrow- let us know how you make out.
Bob- the thing is it looks like he's done digging! I wouldn't change your course of treatment he says. How about finding out definitely what I have? I will ask him to look further next visit. I was just too shocked when he told me on the phone.

Gosh wannabefree....I dont know what to say. That is frustrating. Please do not get hung up on blood work. If it smell like it, feels like, looks like it....probably is it. Try to focus on achieving the best results from the treatment you are using. Get hard copy of allyour blood work, they have to give it to you. I get all my medical reports from every specialist I go to. I also get the letters they send to my primary. I want to know what is being said about me. I never been denied the papers. Best of luck.

Oh yeah if they act like it's a big deal tell them you understand it will take a little time and are willing to allow them enough time to gather the information. They may charge you for all the back copies. If you get the copies on the way out the door from an appointment they dont charge.

hang in there wantabe, it a complex journey, be strong and follow your instincts, hopefully with the help of a good doctor you can crack the code and get a diagnosis.

Good wishes sent your way...

Isn't it wierd - do you say congratulations on your one year anniversary onset of a disease? I need a RA etiquette book - hang in there, CathyLOL Cathy- no I guess congrats or Happy Anniv are not appropriate are they? Thanks for acknowledging it tho. I wish I didn't remember the date so vividly but it so changed my life I don't think I'll ever forget it.

I really went from feeling like I was on top of the world physically and health wise to being taken out at the knees.

Well all I can say is today is here and my worst nightmare did not come true. I don't know why but I was scared that when I woke up this morning it was going to be like last year all over again. I have been plugging along not feeling "well" but not being in what I call "the bad place". I am so afraid of having a flare. I have been so blessed as to never having one thus far. (Another reason to think maybe it's not RA?????)

Wow,that's like having the rug pulled out from under you. Definitely stay the course, but when you get your bloodwork investigate. When you have your next appointment you will then have all your ducks in a row and you can ask some pointed questions.

I have said many times before that I'm actually grateful for my RF and CCP numbers because it's far more definitive...weird I know. Okay, so he hasn't put a name to it (yet) but you hurt and have all sorts of symptoms and are being treated for them as if it were RA. This is not unusual when you are first diagnosed and don't have the blood work to give a definite diagnosis.

I am sero-negative and have been for many years. That doesn't mean my Sed rate is not often through the roof and I have some damaged joints. Over the years three different Rheumys have dx me clinically with RA.
Don't get discouraged because it doesn't have a name, call it autoimmune disease if you want to describe it to others.

Ann

I know how you feel. I am sero negative too, however, my sed rate and ccp were high. My rhuemy at the beginning just started me on plaquinel. When I flared (badly) about 12 weeks ago, I happened to call her and she had an opening and asked me to come in as she wanted to see it for herself. When I went in and she saw the swelling, and all the pain on my face, it solidified her dx. Hopefully, you won't have to flare to have that happen. But for 9 months, I was not diagnosed officially. My rheumy said that is fairly common. As a matter of fact, she is reordering the RF and ANA bloodwork to look for changes. She told me it could take a few years to show on the the RF and sometimes never. I am responding better to the meds and she recently added enbrel. I guess if it walks like a duck, quacks like a duck...Good luck and if you're responding positively to your treatment then something must be working...Hiking_gal

I am such a nitwit. I must have serious brain fog problems. I thought today was November 13th. It's 1 year tomorrow......
I almost had a martini to reward myself for putting up with the past year. That's when it dawned on me I was a day ahead of myself.
I put the Stoli in the freezer- tomorrow it will be good and cold and I will toast to myself
frain bog

Odd, that you would just now be told your bloodwork is fine, but I think symptoms tell the story, so negative or positive, you may still be stuck with the diagnosis. I think we all go thru stages where we wonder if we really have this, I know I have. You can always go for a consult with another RA if you're not feeling very confident in your doctor.

Take care

Cathy