View Full Version : Follow-up with Rheumy this morning....

07-03-2008, 04:49 PM
So this morning was my follow-up appt with the Rheumy.

-diagnosis for now is "Unspecified inflammatory joint disease" meaning she doesn't know what's going on and wants to take a wait and see approach.

-my X-rays do show some minor abnormalities, but all-in-all look "good". My thumbs have some cartilege probs. and movement out of proper alignment and I have some drift of my pinkys away from my thumb. When I relax my hands, my 4 fingers no longer go together, there's about a 2" gap between my ring finger and pinky. My index fingers also turn a little into my middle fingers. This drift has occurred only in the past 3 weeks- was not there at my last appt.

-She is being conservative and treating me with 3200 mg Ibuprofen/day and a pill to protect my stomach too for the next 6 weeks, then I go back. I've already been on 2400 mg Ibuprofen, then Naprosyn for the past 2 months and have only gotten worse. I tried to tell her this, but it's falling on deaf ears. I just hope that I do not have much more deformity in the next 6 weeks.

-** I tested positive on the HLA-B27 test indicating Spondyloarthropathies as a possible cause. Reactive Arthritis is a possibility.

I still swear I have lupus due to the photosensitivity. WHo knows???

It is going to take FOREVER to finally get to the bottom of this isn't it?

07-04-2008, 08:48 AM
I don't know about "forever", but for some of us, it took a year to finally get a definitive diagnosis. In the meantime, we were told that we might have RA, or we have some type of "Mixed Connective Tissue Disease", or that we had "Unspecified inflammatory disease".
Lupus is very difficult to diagnose because the symptoms develop slowly over time. During your diagnostic process, your test may be negative, you symptoms may not fit the needed number of criteria for diagnosis. So, many doctors do take the "wait and see" approach because that is the only thing that they can do. They cannot diagnose Lupus if you do not, currently, fit all of the criteria. They know that there is something going on with the immune system and that there is something going on that is causing an inflammatory process. They are just not able to pin point exactly what it is until more symptoms appear that guide them in one direction or the other. It is not that they are inept or unwilling, it is mostly due to the fact that Lupus is so unpredictable.
So, it may take a while before you get a definite diagnosis (It took a year for me). In the meantime, continue to insist that they treat you for the symptoms that you are displaying, regardless of a diagnosis, so that you can at least have some relief. Since they have said that it is an inflammatory condition, ask about some of the treatments for this type of inflammation. Many of the symptoms of lupus result from inflammation in various tissues and organs of the body. Cortisone, a steroid manufactured naturally by the body's adrenal glands, has been found to have a distinct anti-inflammatory effect. Cortisone medications made synthetically are among the most effective anti-inflammatory drugs known. Although these drugs can cause undesirable side effects, their use can substantially reduce the symptoms associated with inflammation. The most common and best tolerated cortisone medication is Prednisone.

Peace and Blessings

07-04-2008, 09:19 AM
Hi Jenny,
I have to agree with Saysusie about the taking a long time to diagnose Lupus. I know in my case the symptoms very slowly gradually increased from the time that I was 5 years old until I finally got someone to listen to me. I was not diagnosed until I was 36 years old and believe me I suffered for years and years before I could get a doctor to take me seriously and test me for Lupus. I also have Celiacs Spru disease and Sjogrens Syndrome. You can imagine the things that were happening. I am glad though that the doctor is at least testing you. Good luck and I hope that you get an answer soon and you can also request another doctor if you want to. I know I would. Hugs.