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Old 02-09-2013, 12:13 PM   #1
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Post Need Lupus Help! So many tests,so fast. What do they mean? Any advice is appreciated!

Hello all, I'm new to here.. Thought I'd give this a try.. Iím in the process of seeing a specialist for lupus and vonwilliebrands.. Just a very quick highlight of how I got to be here.. Iím 36, (clock is ticking) Hubby and I are trying for a baby, 4 consecutive miscgrs later, my gp sends me for blood tests. ANA results come back high, then refers me to gyno, he orders.. 23 tests/vials (ones I know, DNA, factor V, vonwill, ANA, and some other A?? test the rest, I have no clue). I just received a call last week, theyíre rushing me in to see a blood and rheum specialist (my apt is Monday). Visited my GP before the call,she confirms that blood work confirms lupus and vonwillie, and the other A?? test was positive, said she doesnít want to tell me the rest of the results and wait for the specialists, closes my folder (I figure if it was all good, she would say) so I thanked her for the suspense and left.. It does make sense to me due to my past health, which I just chopped up to stuff.. 18 yrs old, diagnosed with athirst, pleurisy every time Iím really sick (min 4 times at least) just figured it was because I was sick, bad heart mummer since I can remember. Past 5 years, my fingers/toes turn chalk white in any coldness, Dr. Said itís Reynaudís. I have scoliosis as well, (complete S from top to bottom but not viewable to the eye) and have tingling in arms, legs, canít cross my legs, or lay on my shoulder, arms, legs- theyíll go numb in seconds. I have intense back and muscle pain, getting up in the am is an event some days.. And the days of exhaustion are bad.. but..Again, I chopped this all up to scoliosis, but now Iím not so sure. Iíve been doing some research on Lupus, the organs, vessels, circulation and it makes sense. Another thing I have been paying attention to (personal, sorry) is my urine, itís never clear, some days cloudy as strained pineapple juice. Iíve heard that this may be an indicator to kidney problems which usually have no symptoms (Scary to me) .. I guess in a nut shell, what my question is.. Is that I havenít had the standard butterfly rash (i do have redness on forehead all the time, dry skin and flaky scalp, and nothing helps). I have no issues with the sun except one time rash about 4 years ago on the chest. I have no swelling in my hands etc.. Other than the symptoms listed, has anyone ever been diagnosed this way? Is it just a fluke due to other issues I had, and what type of lupus do you think it is? Personally, I think itís attacking my internal organs vrs skin and other areas.. Thoughts? Any idea of the other test results? Is there questions I should ask this Monday? All of this is new to me, happened within a 2 month period, and Iím trying to stay off Google because itís freaking me out. Thanks guys.

Last edited by feath; 02-09-2013 at 12:22 PM.

 
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Old 02-09-2013, 01:47 PM   #2
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Re: Need Lupus Help! So many tests,so fast. What do they mean? Any advice is apprecia

Feath, hello and welcome. I'm really sorry for your problems and understandable anxiety. I'm glad you're seeing your specialists on Monday.

I want to refer you to the sticky posts (permanent info posts) at the top of the thread list. (They're right above the user threads.) One contains 11 criteria for diagnosing and classifying systemic lupus (SLE). Generally (but not always), you must meet 4 or more of the 11 to be diagnosed. These don't have to be met simultaneously, btw: they may be met over time.

As for your question, Is a malar rash "required"?, I believe the answer is no. You could meet some other 4 (or more) without meeting the malar rash criterion. (There's a separate sticky on rashes.)

The other "A??" the doctor quickly mentioned *might* be APS, antiphospholipid syndrome. APS is a blood clotting syndrome seen in a fair number of lupus patients, or occasionally "standalone", I think. There's a sticky on APS, too, where you can read about symptoms, etc. Recurrent miscarriage is one of the possible symptoms of APS, I believe.

As for urinalysis, I think there are multiple reasons for cloudy urine, meaning reasons other than lupus-related kidney problems---so please don't assume too much just yet.

As for which OTHER specific autoantibodies may come back positive, I don't think there's any way of knowing until you get the results. Two are listed in the diagnostic criteria: anti-ds-DNA and anti-Sm. Yet there are a bunch of others possible, too. (For example, I had anti-Ro and anti-La, neither of which "make" the criteria list.)

Overall disease may be "subacute", meaning systemic lupus is there and needs treated, yet it isn't currently attacking major organs (like kidney, brain, heart, and lungs). In this situation, milder drugs (like Plaquenil) are prescribed. But if it's "acute", meaning major organs are under attack or certain lab values are wildly off, there are stronger drugs available to arrest damage (steroids and immune suppressants). And if APS is present, it's treated with Coumadin (a blood thinner). The bottom line is that, in this day and age, knowledge is much greater and many therapies are available. None of this is exactly good news, but on the other hand, I'm sure glad your gyno got the ball rolling, because the earlier the intervention, the better for you.

Please hang in there. I hope you post again when you can & that others chip in. You'll meet really nice people here who are always willing to talk. With my best wishes & a huge hug, Vee

 
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Old 02-09-2013, 02:13 PM   #3
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feath HB User
Re: Need Lupus Help! So many tests,so fast. What do they mean? Any advice is apprecia

Thank you so much for your reply Vjee!!.. I'm sorry for all the rambling on . YES that is exactly the other test APS! I have been reading a lot of posts on here and have checked out the sticky posts above and it's given me so much insight. I guess the main issue is how fast this is all happening and also, how all the symptoms I have are falling into place.

For the longest time I thought these were all individual health issues, but now I'm starting to believe that they are all symptoms of Lupus.. Symptoms like pleurisy every time I get sick(I've had this for years and my dr. didn't know why) and , the muscle soreness (years spent at physio, yoga, chrio), heart palpitations, heart mummer, arthritis reynauds, mouth sores my dentist would question etc.. I can go on, but I'll stop lol..

In a nut shell, it just feels like a lot at all once, the test results from my gp and showing/saying things that were in my file from the past and putting the puzzle together. It's like a huge Light bulb went on and I had no idea of where to go! I know this may sound ignorant, but a month ago, I had no idea of what Lupus really was.

I'm glad I found this site, I'll keep you posted of the results, and I'm sure I'll need some help in non Dr. terms of what the results mean.

Thanks again ~ Feath ~

 
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Old 02-10-2013, 04:58 AM   #4
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Re: Need Lupus Help! So many tests,so fast. What do they mean? Any advice is apprecia

Feath, you are so welcome! If you're feeling "ignorant" right now---which you shouldn't be, btw---I was beyond ignorant! My jaw literally dropped & I nearly fell off my chair. I knew maybe two things about lupus, and neither even applied to me.

One of my doctors once said that when people have varied symptoms over many years, doctors ought to look for a "single bullet theory". That's a very tidy phrase for this situation, isn't it?

BTW, the symptoms you list are all discussed in the lupus hardcovers I own. (Before buying books, you could visit your local library & borrow some, to see which, if any, you find helpful.) I think it's great that you're reading. It sure helped me understand my doctors better & to ask them better questions.

I'm so glad you found us; we'll look forward to more posts from you. Here's wishing you only better days ahead! Hugs, Vee

 
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lupus diagnosis, lupus information, lupus support groups, lupus symptoms, lupus? help!



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