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    Old 10-27-2015, 06:13 AM   #1
    Jessierie87
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    At a loss for diagnosis

    I'm new here, and wanted to see if I can get anyone input. I'll share my story, and, if you stick it through, please tell me what you think.
    Unlike most people, my symptoms started as a child about 10 years old. I was a relatively healthy kid. I played sports, done gymnastics, track, and basketball, but then I started getting headaches. The headaches never went away and sometimes would get worse or better, but never gone. Around 12 I started having joint pain in my elbows so bad that I couldn't use the affected arm for several days. This went on for several years. I went through a few years of remission, was very active, got to healthy weight and was all around happy. Then around 20 years old the back pain started. It felt like my back was broken in two. After about a year of back pain, I went back into remission for a few years, got back to a healthy weight and was happy with my life again. At 24 I started having trouble with my knees. They crunched and grinded when I walked up and down stairs and were all around painful. Then i started having problems with my gallbladder. Tests came back normal, no stones, but excruciating pain that landed me in the ER at least once. At 26 the back pain came back with a vengeance. I sought help from a chiropractor, which made it so so much worse, plus it was beginning to get hard going up and down steps because of my knees. I finally brought it up to my gp whom I had just gotten established with.She went through my symptoms and brought up lupus, which I had never heard of. She did all the necessary testing and as I waited for the results I done a ton of research. The ANA results came back positive and the antids-dna came back (positive, elevated? Not sure how it's read) so off to a rheumatologist I went. A 3 month waiting list. I was a nervous wreck and convinced I had lupus by that point (I had all the symptoms. Exhaustion, pain, weird organ issues..etc). I walked in, list of symptoms in hand, husband by my side, sure that this would be the easiest diagnosis of this Dr's career. He gave me a quick look over, ordered $4,000.00 of blood work, and sent me on my way. I went for my follow-up and got my results. Same as last, except he looked me in the eyes and said "you have nothing autoimmune going on" and that I had osteoarthritis in my knees and back. I left there in tears. My hopes for relief shattered and nothing but a prescription for medicine that gave me hallucinations in hand. GP gave me the ok to wean off those awful pills, diagnosed me with fibromyalgia, and put me on some semi helpful medication. I eventually went off them and we had a baby (9/15/14) and I've been medicine free since due to breastfeeding, which I recently stopped. But the pain!! I can't take the stairs, I can't do my job, I can barely walk half the time. The headaches never ever go away, I have virtually no memory, I'm about to lose my job from constant mistakes (I've been doing this 4 years, I don't make mistakes), I developed tingling and numbness in my hands this year, and tingling in my face that was misdiagnosed as shingles. Gp reordered bloodword and the same results came back, so she is sending me to a different rheumatologist (4 month waiting list). She also ordered a brain MRI and we just got those results. Everythings good, she said. I'm at a loss and now convinced that I will never get any relief. Maybe I'm just needing moral support, I don't know, but the depression and anxiety might just take me out.

     
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    Old 10-28-2015, 06:28 AM   #2
    VeeJ
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    Re: At a loss for diagnosis

    Hello and welcome. Yes, definitely anxiety-inducing! Did you have copies of your recent labs? Hopefully the rheum also sent "his" labs to your GP, so could you get those too? I'd look for such things as inflammation markers (CRP, ESR); thyroid levels; key vitamin levels (B12, Folate, Vitamin D, etc.); and a whole slew of "anti's" meaning the autoantibody tests.

    Right off the bat, it's possible to have lupus without a positive anti-ds-DNA. Also, there's a "companion condition" called Antiphospholipid Syndrome (APS), a blood clotting disorder, in which headaches (among other things) can occur. (The lupus board has basic info on these.)

    Also, lupus has what I call "close cousins" that feature different AB's, and it makes no sense to test for lupus without considering all of them, too. And there's an early-marker for Rheumatoid Arthritis called anti-CCP that can turn positive very early on.

    What sort of back pain is it? Have you seen an orthopedist? Had imaging tests?

    I'm only a patient but I do see what you're saying, that this # of longstanding problems doesn't feel coincidental. As one of my doctors said to me, with many diverse problems, doctors should look for a "single bullet theory". Well, rheum #1 certainly did, but that's not to say that he got it right, alas. I think many of us saw multiple doctors before hitting pay dirt (I did). Looking forward to hearing more soon! Very sympathetically, Vee

     
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    Old 10-28-2015, 06:17 PM   #3
    Jessierie87
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    Re: At a loss for diagnosis

    Thank you for your reply. I honestly have no idea what he tested me for 2 years ago, all I know is it was $4,000 and my insurance didn't cover it. I misplaced all of my lab results in our move last year. I'm sure everything will be redone in Feb with this new rheumatologist. I hear she's awesome. My gp didn't get the results as far as I know, but I'm sure she could.
    The back pain is not like any other pain I have. It feels like its broken almost, I've had x rays and they show nothing wrong. Its my lower back that hurts like that and then my upper and mid back is like tension and muscular pain. I wish I could remember/find my past results. I just want to know what is wrong and get some relief. 2 decades of this is just too much. I'm 28 years old and feel 80!

     
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    Old 10-29-2015, 02:22 AM   #4
    VeeJ
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    Re: At a loss for diagnosis

    Before next appt. you could read & digest two lists. First: the criteria for systemic lupus. There are 11, of which you usually (not always) must meet at least 4 to sustain a dx of SLE. You may meet these serially, meaning over time: think of checking each off in indelible ink once met. One common pitfall is ANA being positive yet not "high enough" to be counted (per the rheum); and ditto with anti-ds-DNA (for that, labs usually show ranges for negative, equivocal, weak positive, positive, and strong positive). Both values can fluctuate, btw, so that's yet another reason for getting your old labs, if possible, for your new rheum & you both. (Rheum #1 should still have your labs in his files, I think.)

    The other is "alternative criteria", a list of 14 things seen earlier in life in people who later develop lupus. In your first post, you mention a painful bout at 12, which is the sort of thing that's on this list! (My first bout was at 13.) Which brings up another point: your first rheum should have taken a FULL LIFETIME medical history, not just run blood & urine tests! To a knowledgeable rheum, early history can be very significant.

    Both lists are in the sticky post section on the lupus board. I'd seen both before seeing my 2nd rheum, and it gave me great confidence when his office requested that I fax in a full lifetime medical history, in my own words, BEFORE my first appt.

    FYI, I had back bouts, too, but none since dx. Also sciatica. You also mentioned "weird organ issues". What were those? (Just curious.)

    When is your appt.? Thinking of you, Vee

    Last edited by VeeJ; 10-29-2015 at 02:22 AM. Reason: spacing

     
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    Old 10-29-2015, 02:50 AM   #5
    Jessierie87
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    Re: At a loss for diagnosis

    I'm going to look today for my previous labs. He never did a urinalyses on me. Just the blood work and he pretty much scoffed at my page and a half long of symptoms. I think he was upset that my GP suggested lupus to begin with. I honestly don't care what I have as long as its figured out and I get relief.

    I forgot to elaborate on the organ trouble. It's nothing major, but when my husband and I decided to conceive, I found a new obgyn that was closer to me. She did a complete physical exam on me, including pressing on every organ in my abdomin. When she got to my gallbladder (which I had already been to the er for and then laughed out of the surgeons office), I jumped off the table from the pain, so she sent me to get an ultrasound. It showed that my gallbladder lining is abnormal, but has no stones, so nothing can be done. So basically, I have to live with the same pain as someone with stones, but can't have anything done about it. From what I've researched its uncommon, and can be deadly, but who am I to argue a surgeon? All I know is what the internet tells me. Also, my most recent labs said something was high in my kidneys. I don't remember what it was, but its on my husband's computer. And I'm actually on my way now, to have an MRI done of my pelvis because I have a growth in there. Just one more things to add to my growing files!
    As far as a complete medical history, I don't really have one. My mom never took us to the Dr as kids, so when I was crying from the pain at 10 and 12 years old, she gave me some Tylenol and said "its just growing pains, it'll go away soon". But it NEVER did. Maybe I'm a little bitter about it now...lol. So my medical history kinda started about 5 years ago.

     
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    Old 10-29-2015, 05:58 AM   #6
    VeeJ
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    Re: At a loss for diagnosis

    That phrase "growing pains" also rings bells. Many of us have heard it, I think. When one rheum whom I've read (a famous one) writes this phrase, he uses quotation marks, conveying just a little bit of sarcasm, I think.

    As you did once already, you should write up your own medical history. HOWEVER, my advice is to make it as brief & concise as possible. (Doctors love brevity.) I did a bulleted list, sentence fragments only (not full sentences), citing each symptom ONCE, arranged in order of first appearance, with a few words appended to convey frequency/severity. To illustrate: "Age 13, widespread pain in joints & long bones of arms/legs, duration approx. 1 year. Since then, recurred most years 3-4 times."

    You could make a copy of this history for the rheum. Even if he/she won't accept or read it, at least YOU have your facts lined up, to answer the questions you *should be* asked about your history.

    My parents didn't do such a good job either, but I've come to understand they just didn't know any better, their small-town doctors were clueless, plus my problems evolved over time. No one's fault, it just WAS. I'm actually more bitter when I think of all those years I tried on my own, as an adult, to get answers. Ah, well, life!

    Yes, definitely check out the high kidney value that's on your hubby's computer: it's important to understand what it could mean. If it's a value that could suggest kidney impairment, try to use it to see the new rheum EARLIER!

    Good luck today on MRI. Please let us know what happens. Rooting for you & sending extra hugs, V

     
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    Old 10-29-2015, 07:53 AM   #7
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    Re: At a loss for diagnosis

    Hello, I have one suggestion: Once you locate all your previous labs and records, organize them into a standard 3 ring notebook with sections for labs, images (MRI, xray reports, etc), consults, hospitalizations/ER visits, etc. Keep them in chronological order, adding new ones as you go. This will be an invaluable health record of your own to see trends, share with new Drs. and keep track of things.
    My lupus actually started with sacroileitis, and although all my Drs. say back problems are not part of lupus, I think time will prove them wrong. "Growing pains" are one of the alternate criteria on the lists on the sticky posts at top of lupus board here. I'm sorry you've had Drs. that have dismissed your many symptoms. I do hope you have better rapport with your new Dr., and can get in sooner. I would keep calling asking to check for a cancellation spot to move appointment up. Once you get diagnosed, treatment will make a big difference, so you can feel more like a 28 year old again!

     
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    Old 10-30-2015, 07:43 PM   #8
    Jessierie87
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    Re: At a loss for diagnosis

    Thank you for your replys. Those are great ideas. I found my last 4 labs (including the latest). Hubby was wonderful and had them filed for me.

    Ok, on 1/10/13
    Other than some sort of infection (sinus probably, I have a time with those) that I must've had that had my wbc and a few other things out of whack. (She did not test me for autoimmune at this point.)
    T3 Uptake- 20% L (norm 24-39%)

    At this point we were thinking thyroid problem.

    Then 5/11/13
    -T3 Uptake- 19% L (norm 24-39%)
    -ANA direct- Positive
    -Anti-dna (ds)- 13H (norm 0-9)

    This is when she sent me to first rheumatologist.

    -Anti-dna (ds)- 16H (norm 0-9)

    Everything else came back normal. Even ANA which says "IFA Negative".

    Then the most recent 10/16/15 which shows

    -BUN/creatinine ratio- 24 (norm 8-20)
    -ANA direct- Positive
    -Anti-dna (ds)- 12H (norm 0-9)


    So, as you can see, I'm all over the place. My T3 is normal range now, since I was pregnant with my son actually. We are just lost on this. Is there something or not, ya know?

    I really can't wait to see this new rheumatologist. I just don't feel comfortable with the "its just Fibromyalgia" diagnosis. I don't doubt I have fibro, but I just 'know' there's something more.

     
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    Old 11-02-2015, 07:21 AM   #9
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    Re: At a loss for diagnosis

    Anti dsDNA antibodies are pretty specific to lupus, and although yours are not alarmingly high, they are consistently above the normal range, so I think this is pertinent. I would be sure to take these results with you when you see the new rheum. Good luck with your new Dr. I hope it goes well for you.

     
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    Old 11-02-2015, 07:29 AM   #10
    Jessierie87
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    Re: At a loss for diagnosis

    I'll definitely be sure to take them all. My husband is helping me get a binder set up with all my medical stuff. He's so helpful sometimes thank you for your input. I just wish this wasn't do difficult!

     
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    Old 11-19-2015, 05:52 PM   #11
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    Re: At a loss for diagnosis

    Me again! So, I've been fighting this nasty cold and laryngitis. I went to the Dr the other day and doc was feeling my throat, she commented that my thyroid felt enlarged and sent me for an ultrasound. I got the results today and they simply said my "thyroid is enlarged do to benign nodules" when I asked what that meant, she said "you have nodules and that is making your thyroid enlarged, but its functioning properly" uhhh, ok??? She was just a nurse and I don't have my voice, so I couldn't argue the fact that that was not an answer. So I thanked her and hung up....but, you can't tell function from an ultrasound, correct?? Now I'm confused even more!

     
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    Old 11-20-2015, 05:11 AM   #12
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    Re: At a loss for diagnosis

    That's correct: blood labs convey thyroid function but ultrasound only provides further insight into those lab values. I imagine the nurse meant that your thyroid lab values are still in-range. (Doctors can't prescribe thyroid meds until TSH is out-of-range, even in the presence of nodules, because to doing so is dangerous.) But when nodules are numerous or large, although almost all thyroid nodules are benign, sometimes the doctor calls for biopsy.

    But I'd want to hear the U/S results from the doctor, not a nurse; are you seeing your doctor to review them? And when do you see new rheum? Hang in there. It may not feel like it, but I honestly think you're making progress.

     
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