1st, "You have RA," then "You don't have RA"?

[Nymph]

   
Hi.

I feel kinda shy about talking about this.

I was diagnosed with RA in August. That rheumy had at first said upon the physical examination, "Well, you don't have RA. You probably have Sjogren's." Then after she got my blood work back she said, "You have RA," and put me on Plaquenil.

Thinking I have RA... although I had really thought that I had primary Sjogren's... I started to worry whether Plaquenil would be strong enough to put me into remission and/or stop any progression. In the meantime, I had moved temporarily to another country.

In this new country, I finally went to see another rheumy on Tuesday. I told him the short version, he gave me a cursory exmination, and told me that I do not have RA, I probably have Sjogren's.

AAAAAAAARRRRRRRRRRRRGGGGGGGGHHHHHHHHHH!!!!

(Good to get that out.)

So, here I am, alone and homesick, feeling only moderately crappy, trying to achieve the goals for which I'm here, not doing very well at that.

If it were just this doctor, I would say, "You're full of it. You think after 20 minutes you know what's going on with me when my other doc spent over an hour with me, did a thorough exam, and ran her own tests? Whatever dude." However, when what he's saying is exactly what I myself thought... when it lines up with the doubts in the back of my mind about my diagnosis... then his words have more power.

At the moment I am vacillating wildly between hope and confusion. I also feel very alone, because now, once again, I don't feel like I know how to move forward.

Thanks for listening.

[CMNK12]

  Sorry,man that is terrible. How long are you there? Did this new doc do any labwork and do you have your old chart with you? I believe I would have to ask on what grounds are you making that diagnosis? What evidence do you have o great doctor? Sorry feeling a little disgusted right now. CK
 

[SjoDry]

Nymph,

So sorry to hear about what you are going through.  I am sure that you are incredibly frustrated.

I do think asking lots of questions of your doc is a good thing. One of the criteria I use when choosing a doc
is how that person arrives at a diagnosis. That is...does he/she diagnose solely diagnose on bloodwork? Do they look at the
whole picture? Are they willing to treat symptoms if the bloodwork does not show the typical markers? At the end of
the day, we want to feel & function the best that we can. At the beginning of this journey, I was driven to get that Dx label.
But as my symptoms got worse, I did not care as much about the label as I did/do about how I feel & my quality of life. I need
to function..just give me something that helps me function to the best of my ability/symptoms. I think that the reality is that many of us
will never have the straight forward answers/Dx that we want. I am sure that it does not help to be in a different country and out of your
comfort zone in so many ways. I hope that you are able to get some relief from the Plaquenil 

Hang in there!
SjoDry

[Seeker]

Howdy Nymph, sorry you are having such a time of it.  Glad you over came your shyness and talked about this.  Many of us here have had similar experiences.  We kind of feel like a ping pong ball being batted back and forth. 

The main thing is that you are getting treated.  Sjogren's and RA are both Autoimmune disorders. So the treatments are similar.  It is not unusual to have conflicting diagnoses.   Be patient, I am sure later on down the road, you will have more definitive answers.

Keep us posted and always feel free to vent here, if you need to.  There's always an ear here willing to listen.

Seeker   

[Nymph]

Thanks, everyone.

Yes, I do think that later down the road I'll have answers... I hope! Of course to have answers it would probably have to get worse, so in that sense I am thankful. Yeah... what kind of docs are these, anyway? The first one seemed pretty good - she did listen to/discuss all of my weird and various symptoms, but her final decision was on bloodwork - seems like a trump card for her. The doc here did not take the time to get the whole picture... but his conclusion was still similar to the one I reached myself. On the other hand, the first doc, after telling me I had RA, gave me plaquenil and said she'd see me in a year! I have not yet run across anyone else with a new RA Dx who isn't going back for a year!!! So that's why I went to this guy. I guess my joints just don't show much on examination. On x-ray, however, they show "periarticular osteopenia" - which says to me that something is going on. If anything, that's the one thing that keeps me thinking that perhaps I do indeed have RA. Why else would the bones near my joints be thinning? I'm 34, never on steroids.

Plaquenil has made a difference in my pain/stiffness levels. I wish I could say the same for my energy levels. If it's RA, though, I think I'd need a stronger drug to prevent joint damage. At least that's the ACR recommendation for my profile. Then again, I probably don't meet the ACR dx criteria. Not sure where that leaves me. That's the main reason I want a definitive Dx. Of course, it would make me feel a little less crazy to have one, too. At least there seems to be a consensus that something's wrong with me! 

[reesatay]

This shows how an autoimmune dx is not always black and white.  It is how doctor's interpet the labs and your symptoms.  Maybe you have both RA and Sjogren's or one or the other but you deserve to understand why the doc thinks this.  Start working up a list of questions so you have it ready when you see your doc again.   I like the suggestion to ask the doc how they came to their DX that differs from your previous DX.  It definitely seems something is going on with you since the docs put you one meds.  I hope the meds make a difference.  Definitely see your doctor more then once a year.

[Nymph]

Yeah, crazy, huh? It was the doc who said I have RA who told me to come back in a year....  I am at a complete loss about that!

[MaryBee7]

Hi Nymph, yes you're learning the Rheumy Language of "yes you do" and "no you don't"  argh!  Am sorry this is happening to you away from home, too.  With each disappointing rheumy visit I used to have, would sit in my car and tell myself that this must be a lesson in Skin Thickening & Patience.  That can be tempered with a slathering of Assertiveness.  Hoping you find some good times in your time away from home!

[Nymph]

Thanks, Mary. I am determined to make this time away from home a good one, doctors or no!

Yes, I've been doing a lot of research on the various terms in my chart and what their relationship could be to my Dx and treatment plan. Things are starting to look clearer, and I feel more at peace about the treatment I'm on. There are other avenues to explore, too, and more (very knowledgeable) people to help guide me. I think I'm on the right track and will persevere whether my Dx is clear or not! For now I am thankful that the Plaquenil is helping. Thank you all for your understanding and support. It is a very strange feeling to know and then not to know but to maybe know. I'm glad you understand.