Waiting for DX - Need help with all of these labs! | Arthritis Information
OK, so here I go..... I am new to this forum, alittle about me.... MS dx in 1997, Hypothyroidism dx in 2001, asthma dx in 2007. I have been having problems for last year or two. I had bone scan that showed inflammation, polyarthopy (sp?) in all joints. I went ot my 1st Rhuemy visit the end of Feb. I had my 2 nd appointment with my Rhuemy on Thursday but it had to be rescheduled so now I don't see him until April 5th (which feels like forever). In the meantime I talked them into giving me my labs they did on my first appointment (approx. 50 pages worth). I am more confused than ever!!!!! The rhuemy had told me on my 1st visit that he didn't think it was RA because my saccrum joint was affected and usually RA doesn't affect the spine. He was leaning towards Reactive Arth. or Ankylosing Spondylitis. Well if you don't mind let me list some of my test results and give me your input?
RA Factor......
Rehuematoid Factor Result 10 Range 0-14 IU/mL
HLA-27......(for Ankylosing Spnodylitis)
Negative
EBV (Epsteen Barre) Antibody........
Postive for EBV IgG, Negative for EBV, IgM
Protein Electrophoresis, Serum.......
Normal Ranges
Parvovirus, IgM.....
Parvo B19 Ab, IgM Negative
Parvovirus, IgG.....
Parvo B19 Ab, IgG Positive
Anit-Nuclear Antibody......
AnA, IgG Negative
ASO........
ASO Negative
Immunoglobulins.....
IgA Normal
IgD Normal
IgG Normal
IgM Low (Severe levels)
Protein Electrophoresis, Urine......
Free Kappa:Lambda Result 10.50 (High) Range 2.04-10.37
Chemistry.....
Sodium Result 135 (Low) Range 136-145
C-Reactive Protein Result 1.1 (High) Range 0-1
All other labs normal. I don't know hat to make out of all of these!!!!!! The RA Factor seems normal, am I misreading it???? Also I tested Negative for the AS gene (HLA-27)?? Anything thoughts are appreciated!!!!!!! I will drive myself crazy with all of this by April 5th!!! Thank you all! Welcome to the forum, but sorry you have to be here...sounds like you've had a lot to deal with medically. I know it's hard not to drive yourself crazy, especially when they gave you so much labwork. And I thought my RD gave me a lot of tests!
It is said to be true that the sacrum usually isn't affected in RA...did they determine it was affected with the bone scan (nuclear?) or by your input/clinical exam? Reason I ask is that I have a great deal of sacroiliac pain, but the scans didn't show anything so the pain is probably not the result of AS or RA, or at least that's what they tell me.
I've always seen the RF as 0 being negative all others being positive, so I'm kind of surprised they gave a normal range. Even if it weren't normal, 10 seems fairly low on the scale of positives. But you can have RA without a positive RF...I'm seronegative myself. I also tested negative on HLA-27, which I thought was an indicator for RA as well as AS, but again, you could have the disease without the positive test.
Did they run an ESR (sedimentation rate), anti-CCP, or ANA? These are some other tests sometimes run, but perhaps you didn't list them because they were normal. The CRP and ESR show inflammation, but your CRP doesn't seem very high. Although I wonder if your other diagnoses and/or medications could affect these results.
So all that said, how do you feel? Tests are one thing, but my RD swears by clinical exam. Do you have joint pain, swelling, morning stiffness, etc? I think without some definitive test results, these factors become very important to diagnosis. Unfortunately, I don't know a great deal about how AS initially presents, but the sacrum involvement would lean in that direction.
That's all the input I can think of at this point. I know it's hard but try to stay calm...April 5th is only a few weeks away. Getting information is good, and especially figuring out what to ask the doctor when you see them, just don't let it get you crazy.
BTW....
www.labtestsonline.org is a great place to look up tests you're not familiar with, perhaps that will provide some more information for you.
http://www.labtestsonline.org/understanding/
Try not to worry, as stress, especially over something you can't control, will likely make you feel much worse. I am not well versed in labs, other than looking them up on line, but there are others here that may be able to answer specific questions. Also, lots of people here are RF negative, but still have RA. Be patient, as it often takes awhile for a definitive diagnosis. In the mean time, keep a journal of your symptoms, when you feel good or bad, how long you are stiff in the AM, how long your symptoms last and what joints are effected.
Also, you may want to read up on RA, the medications used to treat the disease and research Rheumatologist in your area just so you are prepared in case this is the diagnosis you get, and also so you can discuss the disease and its treatments... or at least understand what he may discuss with you.
What are your symptoms? Did your PCP suggest it may be RA?
waddie2010-03-20 15:49:05Thank you for your quick responses. To give you alittle more detail... in January I had a very painful episode with my lower back and hips. Extreme pain and bed bound for 2 weeks. At the time the doctor said it was related to MS (i disagreed, the pain was different from how my MS usually feels). I was given 2 back to back packs of oral steroids and within a few weeks I was better. Then in mid February I awoke with a sore tailbone by the next day I could not walk, sit, move without being in terrible pain. I went to my neurologist who said it was NOT my MS and ordered multiple MRI's and a bone scan. The MRI's showed inflammation in the saccrum joints with some soft tissue inflammation and endema. The total body bone scan showed inflammation(arthritis) in my whole body, both shoulders, elbows, wrists, hands, hips, knees, ankles, feet, saccrum and jaw. He sent me to the Rheumy. I have only had the one visit with the Rheumy so far. He suggested not RA but instead the reactive or AS. I am currently dealing with alot of pain and stiffness. I am the mother of a one year old so this has been very hard not to mention trying to work full time also. I am just ready for a dx so I can start some treatment and get to feeling better. Thank again for your help and comments.Hi,
Sorry to meet you this way.....
I'm another seronegative and have come out normal in darn near every single test for the last 16 years. I have PsA, OA, CPPD, possibly RA [they're content to leave the diagnosis as PsA], hypothyroidism, asthma, and diabetes type 2. The jury is still out on Ankylosing Spondylitis, but I'm betting I have it, just as I feel certain I have cricoarytenoid arthritis.
This winter something unusual happened - my back, specifically the cervical area and the lumbar-sacral areas, became inflamed. I do have DDD but the symptoms I was experiencing were more suited to Ankylosing Spondylitis, even though no fusion showed up on the x-rays. I also had some other things going on [Vitamin D deficiency and flip-flopping TSH] which made diagnosis difficult. My back symptoms presented with general pain and inflammation in the upper and lower spine areas. I couldn't turn my neck to back out of a parking spot. Moving my lower back, as in getting in and out of the car, was a serious challenge. But for me the scary part was that suddenly in the middle of the night I would wake up gasping for air. To set the record straight, I deal EXTREMELY well with anxiety and stress and am one of those people who falls asleep within 5 minutes after her head hits the pillow and stays asleep. My heart is in excellent condition, so that wasn't the cause of the gasping for air. No asthma-related problems at that time. Happened when I was only in that position [lying down]. I also noticed that other strange things were happening, as I had some mild urinary incontenance. My spine was inflamed.
As it turned out, I had knees and other joints flaring [not around the axis] and had several cortisone injections in those knees and arms. As a result, the cortisone apparently circulated the body and quelled the inflammation in the spine. Suddenly I wasn't waking in the middle of the night gasping for air or running to the bathroom.
I've since found out that this [gasping for air] can happen in AS. Yet my x-rays show no fusion along the spine. Nonetheless, there's a high rate of comorbidity of PsA and AS......so all the more reason to suspect I have it in spite of being negative for HLA B27.
I believe that our knowledge of rheumatological diseases is very elementary. We have such a long way to go. But the good news is that the drugs used to treat these diseases are pretty much used across the rheumatology spectrum.
I've learned not to put too much credence in test results. For me it's all about how I feel and how well I'm functioning. [Though I do track those test results like a hawk.]
Hang tight.........you're doing the best you can by seeing a rheumatologist who is obviously thorough. Before you know it you're going to be an expert in your condition. I know it seems like the appointment is a lifetime away, but it will be here soon.
I wish you luck.
I certainly hope that you get a dx soon and get the help that you need. Let us know what the RD decides.
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