Autoimmune Disease, such as RA/Lupus or not?

[trooper808]

About 1-1/2 months ago, I went to the doctor for the millionth time complaining about pain and fatigue, along with other symtoms.  My doctor did a thorough exam along with testing my tender points searching for a Fibro diagnosis which, incidentally I aced - ha, ha!)  After 100 questions or so she diagnosed me with Fibromyalgia, wrote me a prescription for Lyrica, and ordered a whole list of blood tests just in case to rule out RA, Lupus, etc.  When my results came back, she called me into her office and told me I tested positive for Lupus and RA (to my surprise).  She then ordered another battery of blood tests and a urine test to try and get more specific info and set me up with a Rhumatologist.  When the results came back for thiese tests, everything came back normal with the exception of my Sed Rate which was elevated (normal 0-20 mm/hr - mine was 48 mm/hr).  I see my Rhumatologist on Wednesday, so I'm not sure what to think.

My question is, how can I test positive for both RA and Lupus not even 1-1/2 months ago and then take the expanded blood tests and all came back negative except for the Westergren Sed Rate?  Does this mean I don't have to worry about RA and/or Lupus anymore?

Any comments would be appreciated, because I really don't know what to think.

Thanks!

Trooper808

[selmaS]

I know exactly what u mean...I've been trying to find out what my issues r for more than 20 yrs....basically my whole life......I always got the brush off....or told it's all in my head as well...even given meds...!!!  I never took them, but gracious y do drs do this to people....I swear they proceed slower than snails most times. I totally understand ur frustration, and the eagerness to finally know what is wrong, but brace urself....once u have a dx....doesn't mean u have the right dr for treatment...I got my dx last Feb and am still waiting for treatment...just had more test last wk...so be prepared.....and don't expect too much at ur appointment.....then it won't bug u as much afterward.

And if I didn't mention it b4 get copies of all ur tests on CD and copies of the reports!!

Godspeed
"selma"

[trooper808]

Thanks, Selma.  I've been awaiting the appointment with the Rhumatologist for over a month, but I bet all he does is order more tests and I won't know any more than I do right now.  The waiting is the toughest part because you have no idea what's wrong with you, but you know that something is.  I've had whatever I have for years (over 20 at least), and not one doctor thoughout this whole time every listened to what I've said and took action on it; they just brushed me off and told me it was my arithritis (I have Osteoarthritis in the back) and a few even tried to convince me it was all in my head. After a while, I just completely stopped asking for help.  

Recently, we switched Insurance Carriers and had to switch our Primary Care Physicians.  This time instead of a regular PM, we went with an Internist and have never regretted it.  It took just one appointment.  She patiently listened to everything I had to say, asked millions of questions and actual took action.  But I guess ignorence is bliss; I've had more stress just waiting to know what's wrong with me, as before I was just resigned to being the way I am (but not liking it one bit) if you know what I mean!

I'll be asking a bunch of questions when I see my Rhumatologist on Wednesday and will try to remember a few big pointers and post them.  It might not be until next Wednesday or so, as we are going to Texas to see our grandbaby.

Thanks for the response!

[Jules77733]

The initial test for lupus is to check your ANA level...the problem is, ANA can be positive for a battery of other diseases, not just lupus. What you were probably tested for next was dsDNA (double-stranded), a more specific--and expensive--test for lupus. If you passed this test, then odds are you don't have lupus...be really glad about this!!! I'm not familiar with the more specific tests for Rheumatoid Arthritis, because I assumed that the Rheumatoid factor was enough to diagnose this condition. I guess with your other bloodwork results, the doctor wasn't convinced that the Rheumatoid factor was necessarily an indication of RA, or that your swollen joints are a result of RA.

An elevated ESR means you have serious inflammation going on, indicative of a rheumatological disease...so your Rheumatologist will definitely order a litany of bloodwork to test you for all kinds of autoimmune and vascular diseases (i.e. vasculitis). It sounds like the RA diagnosis wouldn't account for a lot of your symptoms or the other pains you're feeling, besides your joints.

I wouldn't settle for fibromyalgia as a diagnosis just yet. If the doctors can't seem to suggest any other diagnoses, then I would request a CT scan of your brain be done--fibromyalgia is almost always evident in these results.

Good luck and I hope you get an answer, soon!

[selmaS]

Hi....since u have a dx of fibro...stop by the fibro forum here on med help.

My drs have flipped flopped on the lupus dx also...I don't understand that either.
Did u have a brain MRI to rule out MS too?

I am not sure about sed rate....I am sure there may be others here or on the fibro forum who can answer ur ? I'd like to know and understand too!!
I do hope u continue to post here on med help....it's a great place to vent , and for support!

Good luck
Godspeed
"selma"