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    Old 03-05-2014, 11:06 PM   #1
    openmindgirl
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    Question questions, labs and symptoms

    Hello, I'm a 44 (eek!) year old female, type 2 diabetes, and am having trouble why I've been released by 2 rheumatologists because 'there's nothing wrong with you' and 'you'll feel better when you lose all that weight'. (Parentheses are reference ranges)

    ANA 1:320 Speckled pattern
    CRP 2.7 (0-0.8)
    ESR 38 (0-35)
    CCP AB 3.8 (0-19)
    RA factor - negative
    Anti-DS-DNA 22 (0-300)
    ENA negative
    AN-RNP negative
    AN Smith negative
    SSA negative
    SSB negative
    AB-SCL negative
    AN-JO-1AB negative
    hepatitis screen - negative
    HLA-B27 positive
    RDW - 15.6 (12.1-15.2)
    Urinalysis, normal except for HyalineCST 2.00 (0-0.75)
    protein - trace
    anti-thyroid antibodies - negative (no quantity given)
    mild to moderate SV joint damage visible on x-ray
    Ferritin - 87 (Was 4 in August of 2013, had 2 iron infusions in September and October. No idea what caused anemia and no doctor has considered it necessary to find out. I consume an adequate amount of iron, no oral iron supplement due to it causing stomach bleeds.)

    symptoms:
    fatigue (moderate to severe)
    sun sensitivity (small red rash, looks like sunburn)
    hair loss (by the handful, visible)
    dry eyes, mouth, nasal passages (despite chugging water like I'm paid to)
    diffuse muscle pain/spasms and joint pain
    specific joint pain (hips, back, both thumbs, requires pain meds)
    muscle weakness (bilateral)
    swelling in hands and feet

    Primary care doctor says lupus, hence referral to one rheumatologst, who has since released me back to her for treatment.
    Spine specialist (orthopedist, I do have a slipped disc) found elevated ANA and referred to other rheumatologist (also since released me back to orthopedic care, as it's 'just arthritis, she should lose weight').
    Physical therapist says it's MCTD, and it's "blanking blankblank" that I DON'T have an autoimmune disorder. Test was negative. (He's been doing it for 30 years and has had his hands on a lot of bodies in that time, he knows what he feels.)

    Rheum (both) says ANA is within normal levels, I should lose weight and the positive tests will resolve themselves, see dermatologist about hair loss and sun sensitivity, eye doctor for dry eye, ENT for dry nasal passages, dentist for dry mouth, and return to ortho for arthritis treatment (and she is an arthritis specialist!) I do have Degenerative Disc Disease in my lumbar spine. I fail to see how my slipped disc is causing thumb joint pain. Neurontin seems to be helping take the edge off pain, in all areas. No doctor will prescribe Plaquenil, etc.

    Obviously I can't go back to rheums, as I've been released by them. Should I go for a 3rd opinion? No big teaching hospital in town, would be a couple hour drive to closest mid-size teaching hospital. I do see a weight loss doctor...he will not treat me for weight loss (meds or surgery) until the ANA, etc, is diagnosed and treated.

     
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    Old 03-06-2014, 12:48 AM   #2
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    Re: questions, labs and symptoms

    Oh I get just irate with rheums that ignore obviously abnormal labs that paint a pretty clear picture along with all your symptoms. I certainly would seek a 3rd opinion, and a tenth if needed so you can get some help. This is inexcusable. You have a significantly elevated ANA, CRP, sed rate, some dsDNA antibodies and lots of symptoms consistent with autoimmune disease. With your severe fatigue and weight problem, getting anti-thyroid antibodies and thyroid hormone levels would be advisable too, as that could be a problem as well. I would take pictures of your facial rash to show your next Dr. and consider getting it biopsied if no one will take a stand and diagnose and treat you. Sometimes that is the one sure way to get a diagnosis that cannot be dismissed as "nothing". Just be sure to get immunofluorescent studies done with the biopsy or it will be worthless. I am truly sorry you are going thru this brush=off, which has happened to so many of us. It takes years away from your life when this diagnostic foot-dragging goes on, and it is not fair! I'm jumping on my soapbox, can you tell? Good luck- I hope 3rd one is the "charm".

     
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    Old 03-06-2014, 04:31 AM   #3
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    Re: questions, labs and symptoms

    Hi. How frustrating! CRP and sed rate are unfortunately not specific to any given condition, and ditto with ANA. But what about your RASH? If a dermatologist were to perform a lupus band test (LBT), the LBT might prove lupus---or even point the thinking toward some other AI that also features inflammation and rashes.

    There's a sticky post (permanent info post) on the lupus board that describes a variety of lupus-specific rashes. You could check it out. The "stickies" are located right above the user threads. I hope you post again after you read the rash "sticky", either there or here. And feel free to write more about the rash, as a fair number of us have had rashes with lupus, with Celiac, etc. For example, where does it appear? Is it photo-induced? How long does it last? How often does it appear? Does it depigment or scar, itch, etc.? Looking forward to hearing more, Vee

    P.S. I think the HLA-B27 marker may put you in a group more prone to certain types of lupus---maybe some other things, too? (Not sure.) I'll check my notes to see what I was told about that, later today. (Am running to an appt.) Bye.

     
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    Old 03-06-2014, 06:29 AM   #4
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    Re: questions, labs and symptoms

    Hi again. I thought I remembered writing something down a long time ago about that HLA-B27 marker. It's only a marker, thus not diagnostic, of course, but it is known to be prevalent in certain conditions. The highest association is seemingly with Ankylosing Spondylitis, the spinal disorder. (Interesting, as you listed disc problems!) I think AS can elevate ANA, but you should ask that pointblank. For sure, I'd sure ask more about AS in general, like, how it's diagnosed, how it should be treated, etc.

    Other HLA-B27 associations seem to be: Acute Anterior Uveitis (an eye condition), Reactive Arthritis, Inflammatory Bowel Disease, and Psoriatic Arthritis. (Hmmm... eyes, arthritis, and skin issues are also things you mentioned.) Re: IBD, you didn't mention having GI problems, but certain GI conditions can cause iron deficiency and joint pain, I think.

    BTW, for a diagnosis of MCTD, the anti-RNP autoantibody is required, so your being negative rules MCTD out, at least as of now, based on your latest labs.

    Anyhow, I'd sure want to discuss this positive HLA-B27 marker with, minimally, your PCP, the rheum who ran the labs, and your orthopedist. Heck, I'd ask them ALL. Looking forward to updates, hugs, Vee

     
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    Old 03-06-2014, 09:00 AM   #5
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    Re: questions, labs and symptoms

    Thank you everyone so much! It's wonderful to be told that I'm not just crazy here. A bit more info...

    Tested anti-thyroid antibodies, all normal. I have been hypothyroid for about 15 years, and my levels are tested yearly. Most recent ones showed my Synthroid and Cytomel levels are very good. I've had an ultrasound and my thyroid appears normal.

    Reactive Arthritis was tops on the last rheum's list, but she ruled it out with the x-ray of my SV joints (which are incredibly tender to the touch, my PT has to avoid them during therapy as the lightest touch sends me into the ceiling). They are mailing me all my test results, but said the x-ray showed only mild degenerative changes there, not enough to diagnose Reactive Arthritis.

    Ortho and I discussed AS at lenghth, and he did an MRI. He has ruled out AS, based on the MRI results and my age. I do have about a 5% curvature in my spine, but the only areas with damage are my lumbar vertebrae (kind of collapsing on itself) and SV joints. Between my weight, the HLA-B27, working standing jobs for the past 25 years, and 15 years of dance as a younger girl, he believes that is what it's from. He is considered one of the best spine specialists in town, and I do trust him. He's the one that ordered the initial autoimmune testing, as he wanted to rule out AS and some type of autoimmune arthritis. But, he's also taking the rheum's word as law.

    The rash only appears in sunlight, and always from my neck down, never on my face. Mainly starts on my chest, shoulders, and arms, depending on what is exposed. Clears up within a couple hours of coming indoors, does not scar, itches minimally, and sunscreen does not prevent the rash (I'm very fair skinned, so I already avoid the sun or use very strong sunscreen when I'm out.) I've had NO indication of facial rash. I do have some skin darkening on both ankles, but the rheum looked at it and said 'oh, I have that too, it's nothing'.

    I've had IBS since before there was an IBS to diagnose. Had lab tests, a colonoscopy with biopsies, done food journals, and it's all always ruled out everything but IBS. I control it with my diet. Going gluten-free has no effect on it, or any other symptoms I'm having.

    I've brought up the HLA-B27 with both rheums, and they both brushed it off, based on where my labs were. Both said if that was going to make a big difference for me, it would have happened long before now. Primary doesn't know that much about it, preferred I discuss it with rheum and ortho. Already discussed it's implications with ortho, he doesn't think it's responsible for anything going on now, but bears remembering in the future.

    I do have random itchiness, but recently have chalked it up to dry winter skin. No rash with the itchiness.

    About 10 years ago, I had a couple month period where each afternoon I'd break out in huge hives everywhere from my neck down - anywhere from dime sized to the size of the palm of my hand. They didn't itch, just big raised welts. Saw primary, dermatologist, and allergist. High doses of prednisone didn't touch them. I was tested for autoimmune disorders at that time, and all came back normal. After about 2 months, they just stopped. Never did find out the cause, and never has come back. Now I'm wondering if they're related.

    Also, about a year ago I had a sudden episode where my kidney function tanked. We found it accidentally when my endocrinologist ran basic labs. Saw nephrologist, more tests, diagnosed stage 3 kidney disease, but could not find anything that would be causing it. This lasted about 3 months, and then my labs went back to normal and have stayed there ever since. Nephrologist was concerned about autoimmune kidney disease, but again, rheum says that's not a possibility, and nephrologist has reviewed the labs. Kidneys will continue to be monitored.

    Arthritis has been diagnosed as standard osteoarthritis, nothing more, but doesn't account for muscle pain and diffuse pain in joints that appear normal on x-ray.

    I am going to ask my primary to order the lupus band test. Can you guys think of any other tests I should request? She's pretty good about doing stuff like that. I'm also going to research autoimmune specialists in the state and at the teaching hospitals, to see if I can get names for her.

    Should the rheums be doing a full body physical exam? The first one just took a cursory look at my swollen hands, and declared them not swollen, and poked at my swollen ankles a bit. Second one looked at little more closely at my swollen hands, said they were swollen, and suggested I consume less salt, poked at my swollen feet a bit, and did a visual exam of my spine. That's it. Barely touched me at all.

    Believe me, I will not take 'it's nothing' for an answer. A very dear, long time friend had been going to her doctor for over a year with some very disabling symptoms, only to be told repeatedly that she should lose weight and she'd feel better. It wasn't until she went in for an emergency gallbladder removal that they found that her belly was full of cancer (they ignored the gallbladder, took pictures and biopsies, and sewed her back up). Her symptoms were glaringly textbook for that kind of cancer, yet she was just brushed off as an overweight complainer. She's lost over 100 pounds due to cancer treatment, and no, she does not feel better. So yes, I am absolutely going to follow up on this. I'm not going to be brushed off as having 'fat girl problems'.

     
    Old 03-06-2014, 01:14 PM   #6
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    Re: questions, labs and symptoms

    The lupus band test is the same thing as the immunofluorescent studies I mentioned with a skin biopsy. They look for immune complex deposits that fluoresce between the skin layers. It is done as part of the biopsy specimen exam, but not routinely done, so make sure it will be done if you get a biopsy. HLA B27 is a genetic marker and not everyone with + HLA B27 gets disease. It may make you more susceptible to autoimmune diseases but if your MRI shows no changes of AS, I would not worry. Many SLE patients complain of back pain, disc disease, SI joint arthritis even though Drs are often insistent they aren't related. I think your hives and kidney issues are related and the whole picture adds up to me to look most like SLE more than anything else in the autoimmune family, but I am not a Dr.

    Last edited by ladybud; 03-06-2014 at 01:15 PM. Reason: added

     
    Old 03-06-2014, 03:07 PM   #7
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    Re: questions, labs and symptoms

    Hi. I read a few things about AS that would make me keep it on my radar, even though the rheums and your orthopedist say NO at this time. First, that it affects women's spines less than men's---that instead, women seem to get more of the possible peripheral problems (eyes, kidneys, pain in other joints, etc.). Also that it can develop at *any* age, also slowly. Also, that it doesn't necessarily affect *all* segments of the spine, so presumably it could affect only lumbar? Also, that the sacroiliac/hip area is usually watched, too. For those reasons, I'd want periodic spinal & sacroiliac/hip checkups---which you're probably already doing, given your disc situation?

    What are "SV joints"?

    The lupus band test isn't done very often, as I understand it: only when labs, urinalysis, and the other diagnostic criteria can't confirm lupus, yet there remains a very high suspicion of it. It's done by a dermatologist or dermatopathologist (someone with degrees in both dermatology & pathology). If you discuss having an LBT with your primary, make sure she directs you to someone top-notch, and NOT someone who specializes in cosmetic stuff---meaning, it should be someone "straight medical".

    I'm just a patient---but like you say, these issues feel interconnected to me, too. Let us know what happens when you speak with your primary. Bye, V.

    Last edited by VeeJ; 03-06-2014 at 03:08 PM. Reason: typo

     
    Old 03-06-2014, 10:13 PM   #8
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    Re: questions, labs and symptoms

    SV joint...the joint where the spine attaches to the hips. PT calls it SV joint.

    Spoke to primary. She is confused and at a loss for what to do next. She is happy to complete any referral I think I need, but truly does not feel like she is experienced enough in this area to be able to treat me (I do respect her for that). She absolutely believes something is going on, no question. I will see her in a few months anyway, so we will talk then. I already have one name of another rheum to ask about.

    Ortho has referred me to their pain management specialist (huge group), who also happens to be a spine specialist. So, I will make an appointment and go in armed with all my lab work and show him everything that is not wrong with me. And will bring up idea of AS again as well. He is in the same group as the first rheum who told me my ANA was 'normal' and I shouldn't be having pain anywhere outside my back.

    Weight doc has all the info and is going to confer with some friends and see what he can find out to look at next.

    In the meantime, I have neurontin, a heating pad, and a metric ton of contact lens wetting drops.

    Thank you all again, I will update at some point, I hope. Any and all feedback/ideas/opinions still welcome.

    Edit: Second rheum's issue is that all my positive tests are nonspecific, therefore, in the absences of positive specific tests, there isn't enough evidence pointing in one direction to reasonably deduct that there is anything wrong at all. As in, since nothing specifically is wrong, then everything must be right.

    Last edited by openmindgirl; 03-06-2014 at 10:18 PM. Reason: forgot something

     
    Old 03-07-2014, 12:35 AM   #9
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    Re: questions, labs and symptoms

    That's what I thought, that the SV joint is where sacroiliac & spine connect. When I read up on Ankylosing Spondylitis, the articles all cited the SV joint.

    I get what the 2nd rheum is saying, that your lab results (so far) are non-specific. (This happened to me, too, keeping me in limbo for years. The problem for me was they hadn't run the right tests!) So I'm glad you're lining up a possible 3rd rheum---also that your pain management referral will bring you into contact with another spine specialist.

    I'd keep reading. As I said yesterday, it's striking to me that AS is grouped with those other 4 conditions (uveitis, IBD, psoriatic arthritis, and reactive arthritis). Collectively the 5 are called "the spondylarthropies", and I'd read about all 5 (why not?). You could contact the national foundations, too, and maybe even get some additional doctor's names from those foundations, to add to your files.

    I think the doctor(s) who will eventually help you are the ones who understand that the AI's like AS, lupus, etc. have widely varying presentations. My suburban doctors had ruled out lupus (firmly, repeatedly) because I didn't have a malar rash or positive anti-ds-DNA, which is a narrow view indeed. In contrast, my metro rheum took only seconds to theorize that I perhaps fell within a low-odds "subset" of lupus. So, you could even line up "Plan C", doctors affiliated with teaching hospitals. Given the "law of large numbers", larger practices are more likely to see more "faces" of such conditions. I'll keep my fingers crossed for you, hugs, Vee

     
    Old 03-07-2014, 12:48 AM   #10
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    Re: questions, labs and symptoms

    P.S. Maybe there are also people on the Spinal Cord Disorders board who'd have thoughts to share? To go there, select the hyperlink "Find a Board" (in blue bar above), then sort the results into alpha order. Just a thought...

     
    Old 03-07-2014, 07:11 AM   #11
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    Re: questions, labs and symptoms

    AS starts in the SI (SV) joints and progresses upward. It is sometimes called bamboo spine because the vertebrae get fused eventually with bridging bone spurs that reach up and down and eventually connect. It can be associated with heel pain too. An MRI of SI joints and lumbar spine may be helpful. Women who have given birth can get a less serious, but also very painful condition of SI joints called osteitis condensans, where only one side of each SI joint is inflamed, whereas in AS both sides of each SI are inflamed. So even an xray of SI joints can differentiate those. Maybe the ortho Dr will order those for you. The pain Dr could do an SI joint injection of "cortisone" that can help a lot and last a few weeks to months. I've had those several times, similar to getting an epidural steroid injection, which could be done at same time at your involved disc level. It's too bad your Drs don't just say you have an autoimmune disease, undetermined which one at present, instead of saying nothing is wrong, which clearly is not the case. WE hear you and feel for you!

    Last edited by ladybud; 03-07-2014 at 07:18 AM. Reason: added

     
    Old 03-07-2014, 08:46 AM   #12
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    Re: questions, labs and symptoms

    VeeJ - that is exactly what they are saying. That since I have no malar rash and a negative anti-DS-DNA, that it's simply not possible that I have SLE. Period. My primary has said that the rash isn't required for SLE, so if she, a non-specialist knows...shouldn't a specialist? She has indicated that she will re-check my ANA and other tests herself in a few months if no one else will, and keep monitoring them until something comes up positive.

    ladybud - we did the cortisone injections already. I got slightly more than one week's relief. That is why I'm definitely going ahead with the pain management doc. I'm also going to bring up to him the possibility of a trial of Plaquenil or something along those lines. If I have a favorable response to it, wouldn't that indicate there is an autoimmune issue at work? In the meantime, the Neurontin does seem to take the edge off.

    Can't wait to get the copies of my labs from the second rheum. I want to check these out for myself.

     
    Old 03-07-2014, 09:08 AM   #13
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    Re: questions, labs and symptoms

    Good idea. A trial of Prednisone would much more dramatic and quicker than Placquenil, since it takes 3-4 months to work, and Prednisone takes only 2-3 days. Your PCP is right-you need neither a malar rash nor + anti-dsDNA antibodies for a diagnosis of lupus, if you meet 4/11 criteria. Getting your labs is a good idea, as Drs often tell patients their labs are normal when they clearly are not. ???? Another way of dismissing evidence and placating patients without helping them. GRRRRR!!!
    PS the upper limit of dsDNA is NOT 300. My lab says anything over 10 and under 30 is equivocal, borderline, which is where 22 falls.

    Last edited by ladybud; 03-07-2014 at 09:11 AM. Reason: added

     
    Old 03-10-2014, 05:43 AM   #14
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    Re: questions, labs and symptoms

    Dunno about the dsDNA upper limit. I just took it from the lab reports.

    Unfortunately, a prednisone trial is out of the question due to my being diabetic. Endocrinologst has already put the smackdown on that, and it's not worth destroying my A1C over.

    It was also suggested I try splinting my hands/wrists at night to deal with the pain there. So many different suggestions to deal with something that should probably be pretty straightforward...SMH.

     
    Old 03-10-2014, 08:59 AM   #15
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    Re: questions, labs and symptoms

    Just received the lab results from the rheum. I'm stumped. These values are just becoming more abnormal each test. There's a steady increase from October to December to February.

    ESR. 26. (0-20)
    CRP. 3.0. (<0.8)

    (New tests)
    Complement C3 204 (83-177)
    Complement C4 45 (12-50)

    Anti-thyroid antibodies still firmly negative.

    What's up with the complement?

     
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