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Diagnosis

bloodwork initially fine?

  • By mamadee

    I was evaluated for RA (and other autoimmune issues) in 2012. Everything came back fine at the time. I initially went to a rheumatologist due to late onset Raynaud’s, knowing that late onset RS is a red flag for other autoimmune problems.

    At the time the dr. told me I only had osteo arthritis in my toe, although I had no symptoms. Fast forward a few months and the toe became a huge issue. I now have shoe inserts.

    Fast forward a few more years and now I am dealing with multiple joint pains. At the moment, hip joint pain, worse in left. Knee pain, worse in left, and elbow pain, worse in right. Also have had what feels like sciatica in right leg for a year now.
    And fatigue, some days not so bad, others extreme.

    Went to a chiropractor who told me I have tennis elbow. Did regular xrays (knees, hips and elbow) which showed a narrowing of space in left knee only. Nothing big.

    So I have an appointment with rheumatologist again in a month.

    My question is……given the fact that my bloodwork was clear in 2012……am I wrong to suspect this is not an autoimmune issue? I’m thinking that since x-rays looked ok by chiro and bloodwork was good a few years ago, I most likely don’t have RA? Can bloodwork change that fast? Would RA show on regular x-ray?

    I am 51. Thin, healthy otherwise, and work out. I am having to severely cut what I do exercise wise because everything hurts.

    Not that I want RA…..but I’m beginning to feel a bit crazy. I have all these pains that no one can seem to find an answer for. I had a hysterectomy a year ago….maybe it’s just hormones? Although I am doing hrt, so you wouldn’t think so. I am at a loss and tired of feeling like crap.

    That was a lot longer than I intended! Hope someone has some insight. Thanks!

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  • By Merry

    I hear you when you say you don’t want RA…But. I felt the same way.

    My issues weren’t as severe. I had a lot of achey stuff over a period of years and a lot of fatigue. We always figured it was fibro as I have a family history. When I had a major flare with almost all my joints swollen, my Family Doctor seemed almost happy when he said “It’s RA. Let’s do this simple blood test.” It came back no RA factor. So he sent me to the Rheumy anyway.

    It took her a while to decide on sero-negotive RA. It is strange to be relieved to be diagnosed with an incurable degenerative disease, but it is better than limbo.

    I hope you get a diagnosis soon, so you can have some treatment. I also hope it’s something like your hormones that can be treated and cured and you don’t have to join our ranks.

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  • By mamadee

    Thanks, Merry. I appreciate it. Do you think my bloodwork could have been ok as recent as 2012 and change by now? I did get my appt. moved up to March 12, so not that much longer to see someone who knows about this stuff, thankfully.

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  • By NPEOttawa

    Your story is very similar to mine, including, possibly sciatica now. Some osteoarthritis, swollen, stiff and painful hands and feet, and various other travelling stabbings. Fatigue! X-rays show little change. I am a 60 yr old female and this started up shortly after going off hormone replacement, about a year ago. All bloodwork is normal but the rheumy diagnosed RA based on symptoms alone. My worst fear is that it is not that but something worse. But at least I have a diagnosis so I can start getting some help. The RA meds have helped some…

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  • By mamadee

    Thanks, everyone.

    NPEOttawa, your story makes me wonder if there is a hormone component to it. I feel like I have aged 20 years in the year plus since my surgery–even with hrt!

    My hormone replacement dr. has auto immune issues herself and deals with the hormone aspect with autoimmune stuff. She said it does sound autoimmune in nature to her…..if it is, it will present itself eventually.

    In the meantime, my rheum. diagnosed me with hip bursitis (got cortisone injection and said to get more sleep. He ran RA and ANA bloodwork which was normal. That’s enough for him to dismiss autoimmune disease. He prescribed me pain meds for a week for the flare. Flare for what, he didn’t say.

    The meds helped a bit. I can still feel my issues but they are not as bad. Hip may take awhile. Doing PT for that.

    Also, my hormone doc increased my estrogen, saying that many autoimmune issues respond well to a higher level of estrogen. Fingers crossed.

    So I still really don’t know the why of things. I have a follow up with the rheum. on April 1st. But don’t expect much more to come of that.

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  • By NPEOttawa

    Before I say this, I will preface my comments by saying that I am not a doctor, and these are my opinions from what I am living through and have learned from various sources, hopefully most of them reliable.

    Your rheumy ran RA and ANA bloodwork which was normal and that’s enough for him to dismiss autoimmune disease. You sound very knowledgeable so I’m sure you’ve read all the symptoms doctors can use to diagnose RA when blood tests are negative.
    I’ve seen various numbers for the % of those with RA who are seronegative – up to 38%! And I’ve seen various numbers for the % of those who turn seropositive, from maybe never to 80%. And I’m a lab tech, so I believe in blood tests of course, but they have limits. The “normal limits” for a test will be an equation, something like the average +/- 2 standard deviations – there will be false negatives and false positives. And those who are not positive enough to “pass” the test. And given that this disease, or category of diseases is not well understood, the significance of what is being measured here is uncertain. And now I’ll quit ranting.
    I believe that if a body has inflammation, measurable or not, it needs to be treated, not just treated to painkillers. Are you able to get a second opinion from a different dr?
    Hang in there. I feel for you. I am in the early days of this and still struggling with various medications and still questioning the diagnosis of RA. It was good to get a diagnosis rather than being in limbo but now I worry that it is the correct one.
    And I feel like I’ve aged 20 years since this descended on me, and I look it too. Please post about your April appt turns out? (I have one mid-May.)

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  • By mamadee

    Thank you!

    Believe me, I have gone round and round with the second opinion thing. I actually have a second rheum appointment on April 5th that I made a long time ago. It’s 4 days after my initial doctor follow up. I have not cancelled it yet. I can’t decide if I should go or not.

    On one hand, I want to go to see what they say. On the other hand…….I don’t know what they can tell me since I just came off a round of anti inflammatory and pain meds and my pain is improved. I never did have a ton of inflammation you could see.

    Part of me wants to go just to get an opinion or more insight…..part of me wants to wait for more definitive symptoms.

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  • By mamadee

    Just wanted to update this thread……

    I did get a second opinion. She listened. She asked questions. She spent a lot of time.

    She did x-rays. And found bone erosion in my feet and hips. So….she said that leads her to suspect RA. She is running more blood work, but said even if nothing comes back……there is this thing called sero-negative RA.

    So. I am doing a 15 day round of prednisone to test. But she said there is joint damage, so something is going on. And we will figure it out. Yeah!

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  • By k4rand

    I have only been recently diagnosed with RA and Sjögren’s Stndrome 4 months ago.. all blood tests were negative. Pain in both knees, elbows, wrists and occasionally ankles.. steroid injection worked GREAT for 1 1/2- 2 weeks.. mri of wrist negative.. wasn’t inflammed at time.. knees were.. went back in.. did ultrasound of knees.. swollen and inflammed.. steroid inj given in both knees because dr. Drew fluid out and said they were very inflammed.. fatigue.. chronic pain morning stiffness.. RA diagnosis given.. started methotrexate yesterday. Still not 100% convinced I have RA due to negative blood tests.. any thoughts? Rheumatologist stated 30-40% of patients have neg. lab tests. They only use them to track progression of disease.. UNSURE!!!

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  • By NPEOttawa

    From all I have been reading seronegativity and even normal bloodwork is not uncommon. Since I am in the same boat I was unsure too, and ambivalent, cause who wants this??? But at least I had a diagnosis and some help. And the methotrexate did help some, just not enough. My symptoms were typical, and unfortunately getting worse, so I no longer doubt. But now I know what I am dealing with, though it will take some time to really absorb a and accept it. Best wishes…

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  • By mamadee

    I think doubting is a given with sero-negative stuff. Even though I know in my head it is a real thing and a decent percentage do not show any inflammatory markers in bloodwork.

    While I am happy I found a rheum who will listen and take this seriously…….now I am doubting myself again. I mean….these drugs are scary. I don’t know how I feel about starting something so major if I don’t know 100 percent what I have, kwim?

    I did respond to the prednisone, which is a clue to inflammatory issues……..but what if pred. helps with osteo, too? Or just pain in general? And I really don’t have some auto-immune thing? Now that I am tapering the pred., my symptoms are coming back. But…..what if its just because I shopped to much yesterday and now my joints/tendons/feet hurt more. I go round and round.

    I guess we have to put a lot of hope and faith in our doctors……they take a lot of things into consideration….a lot we don’t even know, I am sure.

    I do plan on writing a list of my symptoms, questions and reactions to meds. and take it with me next time. If she is thinking RA or something similar, I want to understand the how and why before I agree to medications to treat such things.

    Can you share the symptoms and tests you guys have had that led your docs to a sero-neg. diagnosis?

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  • By ktinflorida

    When I was sero-negative, my ANA on the bloodwork was still positive. Do you know if your ANA was positive and if so, what was the pattern?

    Start getting a copy of your bloodwork so you can track this stuff. It is impossible to remember!

    The beginning is always rough. So much to learn and life changing decisions to make… overwhelming.

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  • By NPEOttawa

    I did not have the ANA test. My lab training is out of date but I understand that ANA is only to eliminate the possibility of lupus or Sjogrens, and I do not have typical symptoms of either. I was diagnosed strictly on symptoms (swollen and painful knuckles. bilateral symptoms for longer than 6 months) Then lab tests were ordered and she was mildly surprised that I was negative for CCP and RF but said it happens. She was more surprised that the CRP and sed rate were normal but said she had another patient like that. She did not doubt the diagnosis. And since my symptoms are getting worse (many more joints affected) I don’t either. I’ve had Xrays now that show minimal damage and she is pleased we caught this early enough to avoid that. Lab results (CBC, liver and kidney function tests, sedative rate and CRP) have not changed in 7months (other than a high liver enzyme now) even tho symptoms are worse. The anti-CPP and RF have not been repeated.

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  • By mamadee

    What kind of damage did your x-rays show?

    She mentioned something to me about erosions on toes (spec. baby toes) and maybe hips (I know joint damage in hips but can’t remember erosions specifically there). I am trying to get them to put my x-ray report on my patient portal.

    If one has “erosions” is that something more definitive for RA or inflammatory……..or is that another thing that “points” to inflammatory, but can sometimes be osteo?

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  • By NPEOttawa

    I haven’t researched about Xrays cause mine showed minimal damage and I think perhaps only the ósteo you would expect in 60 year old bones. (makes me sound like a fossil) (Xray and lab are different fields.) I have some lumps in my hands now so perhaps they will re-Xray. I have an appt Thurs.

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  • By CaseyH Moderator

    Hi mamadee,

    I just wanted to jump in on this thread to let you know that we’re thinking of you during this time. I’m SO glad so many awesome members in our community have been able to provide you with some feedback! This is awesome!

    However, I’m sorry to read about all you have had to endure on your path to diagnosis, whether the end result is RA or something different. I wanted to highlight a few quick points that I read throughout this thread and share some articles that may be useful.

    First off, I read the mentioning of seronegative RA and questions on what that means or what it looks like. For more information on seronegative RA, check out this link, https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/ this article also touches a bit on the struggles of deciphering blood work which seems to be a theme on this forum as well!

    Second, just to provide you with some additional background on the diagnosis of RA and the lengthy process it may be, I thought you may be interested in this article, https://rheumatoidarthritis.net/diagnosis/ it talks a lot about the in’s and out’s of receiving a diagnosis, and what your doctor may be looking for at your appointments.

    Third, I wanted to share this article with you on spotting the differences between osteoarthritis and RA that I think you may find helpful after reading your most recent contribution! https://rheumatoidarthritis.net/living/differences-rheumatoid-arthritis-osteoarthritis/

    Finally, I just wanted to tell you how great I think it is that you kept the additional appointment and saw the second rheumatologist. It sounds like this doctor really took the time to listen and understand what you had to say. That is so amazing, and a great example of putting yourself and your needs first.

    I know I’ve thrown a lot of articles at you, so please feel free to peruse at your own pace (or not at all!). I just stumbled upon this thread and found so many awesome contributions, that I wanted to address as many as possible! Please keep us posted as you continue on through this journey. We’re wishing you the best!!

    -Casey, RheumatoidArthritis.net Team

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  • By NPEOttawa

    Saw the rheum yesterday and since MTX and leflunamide are not working well for me and my symptoms are getting worse she has told me to go off both drugs and ordered an MRI. I guess she is not so sure about the diagnosis anymore. Me, I don’t know anything anymore, my physical symptoms are still more like RA than anything else I read about but I feel like I’m back to square one. When I checked online I saw there is a 4month wait time for MRIs at the hospital she chose. And then a month after that I get to see her again. Feel like I’ve been sentenced to hell for the summer. I’m going to feel sorry for myself for a few days but then I’ll have to find some coping skills…

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  • By mamadee

    OMG, where are you that you have to wait 4 months for an MRI?

    That must be so frustrating. My next appt is June and even that feels forever to me.

    I am finished with the 15 days of prednisone, and now everything hurts again. So I guess it did help. The next test is Cymbalta /Lyrica. Frankly, I am scared to even try those, even short term, after reading about them.

    I guess she wants to see how or if I respond to that also, but it makes me nervous.

    What do they want to do an MRI of, do you know?

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  • By NPEOttawa

    Yeah, I live near Ottawa, On, Canada. I’m not going to comment on our health care system – it’s too large a topic, and would require more energy than I have 🙂 I have looked into it more and think the waiting time is more like 3 months and have advice from a support group about a smaller hospital that is more like 2 months. I’m going to see what I can do about switching that today. (It will use all my emotional strength to do this.)
    I went in with such a rehearsed, specific set of questions/ comments but as soon as she heard I wasn’t getting better she decided on the MRI, and asked me which place was the worst. So I believe the MRI is of my right hand, as that is what I told her.
    My GP has mentioned the Cybalta and Lyrica and I have been too afraid to go there yet. But I may sometime soon. I’d appreciate hearing about your experience with them. (And anything else of course.)

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  • By mamadee

    Richard,

    I think my doctor is not ruling out fibro. Because my bloodwork is normal, this is a puzzle of sorts. I put a message in to her to tell her my reaction to the prednisone and told her my reluctance to start the Cym/Lyrica just yet. I really feel bad right now. All my pains seemed heightened now and I am SOOOOO tired. Yesterday I had a face rash…..I am assuming all the pred. is not out of my system and I am still having taper side effects. I am in no shape physically to start any new, major drugs.

    I also asked her opinion, given the fact that the pred. worked so well for me (although I am paying for it now) and asked her a couple more follow up questions about my x-ray results.

    I did not sleep well last night… my lower back and feet were killing me. And this morning I feel like I got hit by a truck. I feel like I am falling apart!

    Will let you know what my dr. says.

    Ottowa, I hope you can get an MRI sooner!

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    • By NPEOttawa

      Thank-you. I have found some ways to try to speed things up. For you, I can’t find in your posts that you’ve had an ANA test for lupus? (sorry if I just missed it.) A facial rash (butterfly rash) is a symptom of that.

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