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confused and upset after doctor appt.

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:34 AM in Arthritis, Osteoarthritis
hello again.
I was diagnosed with RA back in November 2008. I went to another rhemmatologist in Jan or so of 2009 and she repeated some of the lab work. Now, I am negative in all of my lab work. However, I have what I think is a strong history of symptoms. I have/had joint pain, stiffness, swelling, a feeling of just not feeling good almost like a getting sick but I dont actually ever do. The worse stiffness is usually the first hour or so in the morning when I get first get out of bed. My hands and fingers seem to the worst for pain and stiffness but I also have flares in my shoulder, feet area, and my elbows.
Sidenote, I have DDD in my back and have had surgery there. I was having neck pain and suffer with migraines so my nerologist ordered an MRI of the neck and for the most part it was okay but a couple disks have some problems and I noticed on three areas it mentions Osteophyte complex.
Now heres the rub.. when I saw my doctor the other day she tells me that she thinking the is not a connective disease, not RA. What?? She said all along that even though I was negative on my bloodwork it did not mean necessarily that I did not have RA, and with all my symptoms, the fact that I improved so much on Plaquenil and crashed again when I went off of it, plus I have 3 fingers on my hands that are going kinda of crooked, this has happened in the last six months or so. My questions: Why would this doctor tell me this, has this happened to anyone here, your labs are negative but you still have the diagnosis? Why do you think the doctor would change her thinking on this?
I am so very confused about all this. What would you do at this point, if you were me? Would you seek another opinion or wait it out?
Is is unusual to be negative on all labs?
Thank you SO very much for all of your help,


  • having pain is so very difficult...you need answers and understanding i dont have ra but have oa plus spine issues. so you and i are both pain people.
    my understanding is that in its early stages many of the blood tests for ra come back negative. its a wait and see game to see how the disease progresses. if you get relieve from a certain drug it sure makes sense to continue with it. i would stay with the dr that you have the most rapport with. i hope your pain gets under control....good luck....pete
  • RangerRRanger on da rangePosts: 805
    hey Lori,
    I can so much relate to what you are going thru. My symptoms started to appear in my mid twenties. By my mid thirties I was finally referred to a
    Rheumatologist that diagnosed me with OA. I do have many symptoms that
    indicates RA but my bloodwork has always been negative. I have heard that
    many times it is difficult to diagnose RA. I have been on a few different meds to help control this disease. If you have any questions feel free to PM me.
    Take care,
  • I was diagnosed with RA by the Chief of Rheumatology at a city hospital, started on methotrexate and remained okay for several years. THEN I moved out of state, saw a younger rheumatologist. He put me on Enbrel. Saw some swelling in one of my joints at first exam, no joint erosions on x-ray. A couple of years later, he decides that maybe I don't have RA. Pre fusions, I had to go off the RA meds. He decided to keep me off. I have positive RA factor and history of other positive blood tests. He decided on a wait and see approach to see if I really did have RA. Well 18 months later I have developed a deformed left wrist and the beginnings of ulnar drift!!! I went back to see him and asked "does this clear things up?". Ugghhhhhh, just what I needed to have develop. So now back on a DMARD med to prevent MORE joint deformity.

    Soooo.....my opinion is that you should get a 2nd opinion. Be assertive in your care.

    Best wishes to you,

  • Lori, sorry to hear of the conflicting information you have received. There are a zillion lab studies that rheumies do, and yes they can be positive and then negative, and positive again. They are a guide but the patient's history and physical exam are the most important. They also look for trends, flares, quiet times.

    Many people with autoimmune diseases have overlap of 2-3 processes; RA, OA, fibromyalgia, lupus are the most known about. There are also 100 different types of arthritis and connective tissue disorders. Some docs are resistant to put an exact label on your profile (unless labs are definitive) as these problems do wax and wane.....and a label can impact insurance now or in the future.

    I know I was concerned about RA because of my hands and C1-2 arthritis, but my excellant rheumy initially did 16 different tests and when the results came back leaning toward lupus (not definite) he started me on Plaquanil and Vit D. It will be a wait and see scenerio. I do have OA in neck.

    I was very fortunate to connect with an excellant rheumy the first time and established a great rapport. Many people find it can take 3-4 rheumy appts to find one that you truly feel a partner in your care. So I would recommend you stay with the one you feel you can trust and that listens to you!

    The fact that the Plaquanil was effective is a good indication that something is going on....
  • Thank you everyone for the support, you guys are great! I am beginning to understand now when I read that sometimes it can take upwards of five years to get a diagnosis, at first I thought that was a misprint, LOL.
    Well for me I dont know if its RA or OA but I am sure something is going on, I feel just awful right now and hope and pray each and every day that the next day I will feel better.
    This doctor I am seeing now told me she would not consider changing me from Plaquenil to another DMARD because my labs are negative, in other wards if I cannot tolerate the side effects of plaquenil then its nothing. This is a very frustruating condition, but I am beginning to understand slowly albeit, the ramifications of the diagnosis, with insurance, and everything else. Considering my labs are all negative right now it makes sense I suppose that the doctors are being conserative in their treatment and diagnosis. I am just not a patient patient. LOL
    Again, thank you for all your help.

  • Hiya >:D< Welcome to Spine Health >:D< Sorry for your pain, but we can relate to it here :) , so your not alone >:D< I was wondering as your pain is so wide spread as mine is, Have you ever been tested for "Fibromyalgia"? :/ Ask your doctor about this :) I hope this helps you >:D<

    Angie :H
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