I have question (for those who might be able to help)...i just saw another RA doc for my 2nd opinion on Tuesday and after almost an hour with us, he said that he wanted to watch me and not "put me in a box" as far as saying it's definitely RA...instead he said i have "sero-negative inflammatory arthritis" particularly in my hands, elbows and hips. The first doc said it was RA and although the second doc did rule OA, he didn't rule RA - he said he wanted to re-do all of my bloodwork in January as well as do some genetic test for arthritis (HLA-B27) He put me on Celebrex (which i'm already on from the first doc) and Plaquenil. My hips hurt so bad right now from his physical exam 2 days ago that i can hardly get up from a sitting position and my hands just throb from all his joint squeezing and bending of the fingers. I feel worse now than i did the day i saw him! I guess i'm frustrated b/c i didn't get a "real" diagnosis from him but he suggested that although he thinks it is RA, it's too early for him to confirm it since he's only seen my once for the initial consultation. Any thoughts?? Did your doc wait to give you a diagnosis?? I looked up the various types of inflammatory arthritis (Lupus, Reiter's Syndrome, Psoriatic, etc) and i don't have any of those - the only one that "fits" is RA. Anyway, just looking for some thoughts on my visit. THANK YOU!
Hello, sorry to hear you are in more pain now than when you saw the doctor! Hope that calms down soon for you...
(HLA-B27) is testing for ankylosing spondylitis, sounds like your doc is looking for any positive arthritis tests. You dont sound like you have AS, It always causes damage to the SI joint but he is smart for looking at every possibility. If your joint damage is symmetrical, that is usually a sign of RA, but if not than it is more likely a inflammatory arthritis. I believe that is one of they ways they can tell the difference, other than blood tests. The blood test is your sedimentation test and white blood cell counts. They tell if your immune system is causing the damage, if the tests are negative it makes it hard to fully diagnose the RA until you have another flair an your immune system responds. That could be why they didnt say 100% sure you have RA, you didnt test positive at this time.
I hope you get a diagnosis soon! This will help with your treatment plan and preventing your condition from worsening at the rate it is now. Good luck! Stacey
My xrays were normal but the ultrasound showed mild bilateral swelling in the joints most commonly affected by RA. My sed rate was normal both times (1,4) and my CRP was normal (2.3, 3.6). My WBC count was low in 9/09 (3.4) and now it's 5.1 (normal is 4-10.5) and my monocytes were low in 8/10 at 3% (normal is 4-13%) - i asked the second RA doc about those and he brushed them off and didn't seem at all concerned - it seems alot of my bloodwork showed borderline low levels for a lot of things but nothing is glaringly obvious to the doctors. It's so frustrating when i have these symtoms and nothing is obvious. I appreciate your response to my question and if you have any more advice to offer, don't hesitate! Thanks!
It does seem to be common to not have any positive test results. My theory is that unless you are in the middle of a flair up, you will test negative. So it makes it hard to get a positive, you feel your crappiest at home, call the doc, by the time you get there the damage is done and that is all they ever get to definitively see. The doctors obviously see the trend, thats why they usually dont hesitate to test you many times for sed rate and wbc. Unfortunitly, they dont diagnose things very often without those positive test results so people go years with out actual diagnosis.This system is in need of some change, not very cost effective for people to go to the doctors over and over for the same problem, but disease's can be elusive and that is something that will never change.
Try and see if your doctor is willing to give you a blood work order to go do when you feel the need. I have thought of trying this myself but my pcp does not seem like she knows much about that kind of stuff and I am waiting to get into a specialist. I have degenerative changes in my facet joints and disks through out my spine, along with bone growths(spurs). My father has a partial diagnosis of AS, but I tested negative and my blood work was all supposedly normal but I am going to get my blood test records and review them myself. I also have some scoliosis and straghtening of my normal curvatures, twisted pelvis and leg length discrepancy. I can also tell that im getting it im my hands and a tiny in my hips and knees. My doctor is sending me to a physiatrist or physical rehabilitation specialist but is feel like she should send my to a reumatologist because I showed signs of degenerative changes on x-ray in my c-spine when I was 19. I just hope the Physiatrist refers me so I can get to a doctor somewhere down the line that can actually diagnose a general cause for most of my problems. Doctor's help us alot but, sometimes it taks a long time to find the right one's and this is also very un-cost efficient Stacey
Thanks so much for your advice. I think you're right about the system needing some change! And i couldn't agree more about it taking a long time to find the right doctors. Very frustrating to feel the way we do and not have all the answers when we need them. And having a standing order for bloodwork for when i feel really crummy is such a good idea too! I hope you find some relief soon with therapy and a new phsyiatrist. And thanks again for your insights!
I'm wondering if you have what I have. I have had RA type flares for 24 years but nothing ever shows up on bloodwork and I have only mild degenerative changes. I saw my Rheumatologist yesterday for the second time and he is pretty sure it is Palendromic Rheumatism. With that you get flares of quite severe, burning aching pain that last a short time (days to a couple of weeks maximum), like RA. I do continue to get pain after that, but that's just the residual pain from having had the flare. That can take months to settle down (by which time I've often had another flare). It's not always in the same joints which is another give away. The hallmarks of this condition are little or no damage to joints (since the flares, while intense, are short lived), the joint pain migrating to various joints, and in about half to two thirds of all cases, negative bloodwork. To diagnose it they have to see this pattern and also rule out all the other forms of arthritis.
It is a rare condition, (although my gut feeling is it is more common that thought - it's just not diagnosed properly) and in a third to half of cases it can develop into RA. I've had it for 24 years so it's unlikely that this will happen in my case.Treatment is usually the same as for RA.
Talk to your rheumatologist about it. It is such a relief to actually get a diagnosis after all these years - to know it is real and not all in my imagination as I was told frequently in the past. Giving it a name doesn't "cure" it and doesn't take away the pain, but at least I have some answers now.
I have the same things that poor jerseyot has; facet discs and joint degeneration, spurs in my neck which is now severely affected, and extreme pain in large and small joints which 'flares' and recedes continuously. Sit in the wrong chair, even for minutes - twist around or bend to pick something up and it can trigger a flareup where I am hobbling for weeks. I'm now 67, and have been diagnosed with A/S, fibromyalgia, osteo arthritis, degenerative spinal disease and on and on and on. I have been to three 'specialist' rheumatoligists, all of who gave a different diagnosis. I have seen at least 6 GP's, 2 physiotherapists, and a couple (in desperation) natural therapists, more blood tests than I've had birthdays, numerous X rays and three ct scans and I keep getting the same answer. Pain management is all we can offer.. Take the anti inflammatories, do light exercise by level walking and swimming.
This has been going on since I was 35 by the way! I live in Australia, and we have all of the modern technology available, private hospitals which rival any in the world and medical practitioners who are as good as any in the US or any western country, and have been trained to charge as much as they can possibly get for the least amount of time spent with each patient and drive Mercedes. If they give the same general answers that you guys sound like you get, then rest assured that we're all in the best of hands.
Best wishes to all..Kev
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