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First rheumatologist visit

  • By mamadee

    So now I am more confused than I was. Saw the rheum. today for all my joint pain and to make sure it was not an autoimmune thing related to my Raynauds.

    The first thing I thought was weird was I didn’t have to get into a gown. He looked only at my hands, which don’t even hurt that bad. He didn’t examine my knees, elbows, toes, or hips. (although he did ultrasound one hip later).

    He said interrupted sleep can make pain seem worse (even though I told him I got WAAAAY worse sleep before my bladder sling when I was waking 6 times a night to pee. And then I didn’t have this joint pain. And I am tired even with 8 hours sleep.

    He said I prob. had hip bursitis and tennis elbow. That part I agree with.

    He said he didn’t think there was an autoimmune component, but will check blood work anyway. Waiting for that, although don’t expect any surprises, I guess.

    I asked why all these things at once would get so bad, he basically said these things sometimes happen. Ummm…

    He then prescribed me Meloxicam (NSAID), and 500 mg strength Acetaminophin, and Gabapentin…which I’m not even sure what that does. Sleep he said.

    So for not knowing what is wrong with me, he gave me a lot of drugs. lol.

    Then he did an ultrasound on my hip, confirmed bursitis and a knot on my tendon, and gave me a cortisone injection in the bursa, and down the tendon of my outer thigh.

    So……not even sure what to think. He did refer to this as a “flare” , thus the drugs…..but if it’s not autoimmune, then what does this? He didn’t think it was fibro, either.

    It seemed like it came down to……”You don’t get enough sleep from the hip bursitis (not even true), so you’re in pain other places, and here are your prescriptions.

    I guess I will wait on the blood work, and see if the medications help, but I still don’t have answers. And I’m not sure if maybe I shouldn’t try a different rheumatologist. I don’t know.

    Does this seem like it normally goes at a first consult?

  • By Richard Faust Moderator

    Hi mamadee. Your confusion certainly sounds justified and, unfortunately, is not all that uncommon in the diagnostic process. Even though it is after the fact, you might be interested in this article from one of our contributors on what to expect from your first visit with a rheumatologist:

    If you feel your concerns are not being heard, you are of course entitled to a second opinion. The results from the blood work will hopefully provide you with some answers and a path forward. Please keep us posted on how you are doing. Best, Richard ( Team)

  • By mamadee

    Thank you for that link. This backs up what I was thinking. I mean, he didn’t even look at any of the joints I said I had pain in. (except the hip scan, of course)

    I had an original appt. with a different rheum. on April 15….which I have not cancelled yet. I might just keep it to get a second opinion. I feel somewhat weird going in there, like….I already went to someone….I want to know what you think. lol. Especially if my bloodwork comes back neg. I don’t know. It would be nice to talk to someone else about everything.

  • By mamadee

    But also……after a week on all the medication this doc. prescribed…..I’m not likely to have so much pain or inflammation. So do you think seeing the other doc would be a waste of time?

  • By ktinflorida

    I say go to the second Rheumatologist because the first one isn’t going to diagnose you if your bloodwork is negative. That means he doesn’t believe in making sero-negative diagnosis. MANY people have RA and need RA meds who never have positive bloodwork. Personally, I would never recommend a Rheumatologist who doesn’t make sero-negative diagnosis. It means they refuse to treat about 20% of RA patients. You could be one of them.

  • By mamadee

    Thanks, guys! What kind of things do they look for with sero-negative? If my “flare” as this doc calls it (even though he didn’t diagnose anything) is controlled with meds…..what can they really tell? Besides questioning my history, I guess.

  • By ktinflorida

    Click on this link and check it out

    Seronegative Rheumatoid Arthritis

    Many doctors won’t make this kind of diagnosis. My first two didn’t. The third treated me and it helped tremendously. I have since turned sero-positive.

    I hope this helps.

  • By mamadee

    So, saw my hormone Dr. today (I do hrt from hysterectomy_…….who, I found out during our visit, has RA, Sjogrens, and Raynauds. So she is well acquainted with auto immune issues. She even noticed my nose and cheek redness, and I said I was recently diagnosed with rosacea….which she said was also autoimmune. I didn’t know that.

    She said that my symptoms do sound auto immune in nature. But not to be concerned if the bloodwork doesn’t bear that out. It might not right away. It might later, but in the mean time we need to figure out what’s going on and get me back to working out and feeling better.

    She said many autoimmune issues (not Lupus so much) benefit from increased estrogen. Mine is on the low normal side, so she wants to increase that.

    I told her about my supposed insomnia issue the rheum kept harping on…..I described my sleep habits in detail honestly, and she said they were not bad at all. I told her the other doc said that my “lack of proper sleep” was causing me to experience pain more than one normally should. She said, and I quote, “That’s ridiculous.” lol.

    So I guess I will finish out the week of drugs the rheum gave me and see how I feel then. I won’t start the increased estrogen yet, b/c I don’t want to muddy the waters. Not sure after a week of “flare” drugs, how long that improvement should last?

    I go back the the rheum on the 8th to discuss bloodwork, etc. Not sure about the 2nd rheum….might keep that on the back burner. I feel better about things after seeing my doc. today.