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Old 08-17-2012, 08:32 AM   #1
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Would Like Your Thoughts and Opinions

It all started about 6 months ago when I began feeling sick. Had a fever, chills, aches, and just thought it was the flu. Then I began to notice dark urine and clots in the urine. I was given a variety of blood tests as well as a urine test. High amounts of blood were found as well as low amounts of protein. I had no signs of kidney stones or infections. I was then referred to a urologist and through a number of tests (ultrasound, CT Urogram, MRI, Cystoscopy) I was found to have nothing abnormal. Fast forward 2 months and I was sick again with the same symptoms: fever (just would not seem to go away), chills, aches. 24 hr urinalysis showed continued blood in the urine and 250 for protein. Creatine clearance was 1.13...high but not abnormal. And now today, I have been feeling worse. For the past few weeks I've had a mild fever that comes and goes, dizziness that has been getting worse, I feel like I'm in a fog and have a hard time thinking, hands and feet are always cold (sometimes fingers are white), face (cheeks and nose) occasionally looks sunburnt, extremely tired all the time, back pain and leg pain (achy), been losing weight. I am still showing blood and protein in the urine. I was referred to a nephrologist and was diagnosed with Hematuria and Proteinuria. I also had more blood work done and almost everything came back within normal limits. I tested positive for ANA and my doctor said it was off the scale. Normal: less than .9 and mine was greater than 8.0 (not sure what that means). I also tested positive for anti double stranded dna. My number was 10 and the lab showed anything higher than 9 as a positive.

So far, I have not had my results interpreted by my nephrologist, only my primary doctor. But, he said he thinks they will be doing a renal biopsy. Also, my primary doctor is in the process of setting me up with a rheumatologist.

I just wanted to get thoughts and opinions from those on these boards that may have or are experiencing the same things. I am worried and tired of being sick. At least I haven't felt bad all the time...seems to come and go.

Josh

 
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Old 08-17-2012, 11:32 AM   #2
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Re: Would Like Your Thoughts and Opinions

Josh,

I think you are on track for getting a diagnosis, and your clinical picture should improve with treatment. You will likely be put on meds to suppress the immune reaction affecting your kidneys, and the rest of the symptoms should improve as well. Your clinical picture is more clear-cut than most, so you are lucky, in a way, to be getting diagnosed in this short a time period. There are many people struggling to get diagnosed for years, not feeling well, and having no name for their illness. Best of luck to you, and please keep us posted on your progress.

 
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Old 08-18-2012, 06:58 AM   #3
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Re: Would Like Your Thoughts and Opinions

Josh, hi & welcome. I agree that you should pursue those appointments (nephrology & rheumatology) ASAP, hopefully to get a formal dx quickly.

Have you read the sticky posts (permanent info posts) at the top of the thread list? One contains the Am. College of Rheumatology diagnostic criteria for systemic lupus. A person generally (not always) has to meet 4 or more of the criteria, not necessarily all at once, to sustain a dx of SLE. BUT several you've met, the *possible* malar rash & anti-ds-DNA, are considered virtually unique to SLE... NOT that I'm a doctor! Let us know how you're faring. Wishing you speedy answers & much better days ahead, sincerely, Vee

 
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Old 08-18-2012, 07:29 AM   #4
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Re: Would Like Your Thoughts and Opinions

I am starting to read the stickies and there is a wealth of information. Thanks! The rash is on my cheeks right under the eyes and extends out and down. It also goes right across the bridge of my nose. It looks like I was out in the sun. It comes and goes, some days it's noticeable and some days it's pretty subtle.

One other thing I forgot to mention is that my blood pressure has gone from normal to around 150/90. I even had one reading that was around 160/100.

I truly appreciate your posts! I want to be an informed patient when speaking with the specialists. Part of me is hoping for a diagnosis, whatever it may be, just so I can get on a treatment plan, and hopefully feeling better. It's not that I want this...I hope you know what I mean.

 
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Old 08-27-2012, 01:24 PM   #5
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Re: Would Like Your Thoughts and Opinions

Update:
Met with my Rheumatologist for the first time today and we reviewed my symptoms and tests. He said it could either be Lupus, Antiphospholid Syndrome, Vasculitis, or a blood syndrome (sorry, can't remember the name). Had 11 more labs drawn as well as a chest x-ray. If they can't get it figured out with this latest round of tests, then I will be getting a renal biopsy. I hope they can get this figured out soon because I have been feeling worse.

 
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Old 08-27-2012, 03:08 PM   #6
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Re: Would Like Your Thoughts and Opinions

Josh, glad you got started with a rheumatologist & hope you get clarity from the bloodwork. Thinking of you, with best wishes, Vee

 
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Old 09-21-2012, 03:03 PM   #7
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Re: Would Like Your Thoughts and Opinions

Just another update. Found out my ANA titer was 1:80 with a speckled pattern. However, my other blood work was normal, except my red blood cells were a little low. My Rheumatologist doesn't seem to think it's lupus because the blood work was normal (with the exception of the ANA and anti ds dna). So, he sent me back to my nephrologist to address the blood and protein in the urine. I had a kidney biopsy this past wednesday...just waiting on those results. Still in pain, fatigued, losing weight, etc.

 
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Old 09-21-2012, 03:23 PM   #8
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Re: Would Like Your Thoughts and Opinions

OMG!!! The rheumatologist is dragging his feet on declaring this. An ANA of 1:80 is positive, not negative, and the anti-DNA antibodies are specific to lupus, and positive especially in people with kidney disease! How could he say he doesn't think it is lupus? You meet more than enough of the criteria, and like I said before, your clinical picture is way clearer than most when this illness begins. Did he see the ANA level from your previous labs? What more does he want? I'm sorry, but rheums are notorious for dragging their feet with diagnosing, and they ignore anything in labs that doesn't knock them over because it is so off from normal. Maybe the nephrologist will set the rheum straight, and if he still balks, I would get a new Rheum. immediately. One way to pursue this is also to get a skin biopsy of a rash, other than your face, and make sure they do immunofluorescent studies on the tissue. That looks for immune complexes deposited in the skins dermal layer. I'm sorry to get so irate, but while these Drs who don't want to take a stand muse about it all, the patient gets sicker and is without treatment. I get really mad about that and it happens far too often!!! Actually, your kidney biopsy should confirm it. It will be very important to get connected with a support group in your community. Hope you don't mind you'll be in the minority, males to females, 1:9. Keep posting so we can help you out. I have had lupus for 28 years and am still kicking!! Ha!

 
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Old 09-21-2012, 04:09 PM   #9
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Re: Would Like Your Thoughts and Opinions

Josh, I suspect many rheumatologists insist on seeing at minimally FOUR criteria before making the call, so in a situation like this, call for a kidney biopsy for final proof. But I'm with Ladybug, this insistence seems odd, because the combo of anti-ds-DNA, positive ANA, and protein in urine is the "classic presentation" you read about in books & articles.

But maybe there is a legitimate reason to biopsy: not just to prove kidney involvement, but also to "stage" it, to determine the best course of treatment. Anyway, please let us know how you make out; we'll be watching for your updates. All my best, hugs, Vee

 
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Old 09-27-2012, 12:06 PM   #10
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Re: Would Like Your Thoughts and Opinions

So I received my biopsy results. I've been diagnosed with IGA Nephropathy. Because my labs show a near normal functioning kidney, I've been told nothing further is needed except for occasional tests to make sure kidney function isn't decreasing. I've now been sent back to my Rheumatologist to address my other symptoms. The nurse is trying to get me in to see him today or tomorrow. So, my diagnoses so far are:
Livedo Reticularis
IGA Nephropathy
Raynaud's Phenomenon

 
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Old 09-27-2012, 03:16 PM   #11
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Re: Would Like Your Thoughts and Opinions

Josh, did the specialist state that IgA nephropathy (Berger's syndrome) is a different condition than lupus nephritis? (I just read about it, and it looked to me like it is...?) Anyway, I hope this means that lupus is now far less likely a possibility, so that you can start dealing with "just" the one condition, which is surely more than enough. And I think people can have Raynaud's and livedo reticularis with lupus remaining entirely absent. Let us know how your next rheum. appointment goes. Thinking of you & sending my best wishes, V.

 
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Old 11-21-2012, 10:26 AM   #12
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Re: Would Like Your Thoughts and Opinions

Sorry I have not posted an update in awhile. Since learning of my IGAN diagnosis I've had some other tests done. Lyme's and Thyroid were ruled out. My Rheumatologist has told me that he thinks many of my symptoms relate to IGAN and he does not think I have lupus or any other Rheumatologic-related disease, so he has released me from his care. Good news! Much of my pain was coming from a recently found bulging disc and I received a Caudal injection last week. The pain is pretty much non-existent now. I'd like to thank all for your input as I navigated through this. So, my focus now will be on my IGAN.

 
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