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Old 02-23-2006, 04:37 PM   #1
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Lupus

I am currently being tested for lupus. I have alot of the very comon symptoms of Lupus. My doctor sent me for an ANA test today and I will find out the results on Tuesday. I am really nervous. I have always had a feeling that I had it but never thought it would become a reality. Can anyone offer me some advice or encouragement. I am so tired of feeling like this.

Thanks,
Sunnie
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Old 02-23-2006, 09:15 PM   #2
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Re: Lupus

Hi, Sunnie. Here are some places to do some quick reading:
(1) The "sticky posts" at the top of the Board. You'll find the "4 of 11" criteria for systemic lupus, and a list of "alternate criteria". Also, symptoms of antiphospholipid syndrome, a clotting disorder common in lupus.
(2) The "sticky post" that discusses test results contains another resource that has a HUGE amt. of info.
(3) The "Resources" tab above. Go to MedLine Plus, then Rheumatology, then lupus.

If you scan through this info, you'll see that ANA is only a threshold test. It's positive in several diseases, like RA, lupus, etc. But it can also be positive from a passing virus, and even from a family tendency. So a positive result is only a start...

Likewise, it's possible to have systemic lupus (SLE) with a negative ANA, though not very likely.

BUT, there are also "subsets" of systemic lupus, "lesser lupus'es" in which a positive ANA is less likely, e.g., SCLE (subacute cutaneous LE) & DLE (discoid lupus).

Hopefully, your dr. did an ANA test, PLUS lots of other blood tests = the ones described in the "sticky post" resource mentioned above.

What are your major symptoms? Do *you* recognize any of the things listed on the ACR criteria list? This is a very weird list, too. Typically meeting "4" of the criteria sometime in your life suggests SLE. But note that you don't have to meet "4" all at once, so a lifetime medical history is important. And in the lesser lupus'es, you meet fewer criteria.

Now for that "encouragement" part! I hope you do not have lupus, in any of its forms. But if you do, know that MANY CASES REMAIN MILD, with proper treatment & usually sun avoidance, too (alas). Plus, many people do NOT have major organ involvement (kidney, CNS, heart, lungs, etc.)

I hope you post again. I'm sure others will chip in, also. I'm out of town for the next few days, but want to send you my best wishes now. Sincerely, Vee (P.S. I was Dx'ed in 2000 with the intermediate form of lupus = SCLE, positive for anti-Ro but negative for ANA. I had some systemic problems---anemia, etc.---but OK on major organs. I take Plaquenil & NSAID's.)

 
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Old 02-24-2006, 03:53 PM   #3
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Re: Lupus

Thanks! I have many of the symptoms on the list or have had at one point or another in my life. I get the butterfly rash on my face but I also get it on my stomach and arms at random times. Usually when I start to feel really sick. By sick I mean I my joints and muscles hurts. My glands get swollen as well as the lymphnodes all over my body at any given time. Right now it is in my neck. I get migranes after all of this or with it one or the other but the migranes usually start in my neck and work their way up to the top of my head and into my face. My hands go numb for no apparent reason. If I go grocery shopping and then come home and sit down for about 10 minutes or so I have a hard time getting up and walking from extreme pain. I get sharp pains in the left center part of my chest almost right above where my heart would be. I always thought it was growing pains. If that side isn't hurting I am having chest pain above my lungs or even smack dab in the center. The biggest thing is the total and utter exhaustion. The inability to do what normal people can do. These are all things I have been suffering with all my life (or as far back as I can remember) some of which have been added over the years or worsened over the years. I never had doctors as a child so I always thought I was just sick or had the flu. My mom never considered it could be something worse until she was diagnosed by two seperate doctors with Lupus and she remember all the problems I have. When I was in highschool I did a lot of choir type stuff with my church and I ended up going to an island to perform one year. I was out in the sun for a good two hours. I had used sunscreen and still turned beat read and I thought it was a sunburn but it turned scaley and everything. I still thought it was a sunburn. I am thinking now that some of it might have been a sunburn but I think it was also the rash. Because it was only on my forhead and cheeks and over the bridge of my nose (most of it anyways, the worse spots). Anyways that is pretty much it that I can think of right now.

My doctor did send me for an ANA test and will see me on Tuesday for where we go from here. He has my medical history from when I started seeing him but I am also going to right down everything that I can think of that I have been through and hope that helps him with the DX.

Thanks for you encouraging words. I am feeling so ill right now and just typing this has been painful. But it is done.

Sincerely,
Sunnie
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Old 02-24-2006, 04:00 PM   #4
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Re: Lupus

Oh also I don't know if this anemia or not but if I don't eat a certain time or if I get hungry and don't eat enough in a day I get very shaky and feel very week. I have never had it diagnosed because I thought all of what I have told you was just normal everyday life. My mom used to tell that "Life is painful, get over it and move on." I don't think she understood just how bad it really was/is for me.
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Old 02-24-2006, 05:51 PM   #5
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Re: Lupus

One other thing that I just thought of. I also have those tiny red marks on my skin. They are bright red and they are mostly on my arms.
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Old 02-27-2006, 12:01 PM   #6
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Re: Lupus

Hi, Sunnie. I just got back from a short visit & saw your post. Like you, I was told I had "growing pains" in my early teens. But I never grew out of the growing pains. More stuff every few years---sounds like what you've experienced...?

I never had a recurrent facial rash. My rashes were on my arms & back. They looked like welts at first, for 4+ years, didn't itch or burn. Then for 4+ more years, those same welt-like things would reappear but would expand into perfect circles before expanding outward & fading, without scarring or depigmenting. Turns out this rash was the classic SCLE "annular" (circular) rash. The antibody seen most often with it is anti-Ro, so that fit, too.

I got shaky feelings & numb feelings, too, also heart palpitations, etc. I'm not sure how much of that stuff was due to being anemic on & off, though.

In short, so much of what you write sounds familiar to me & I bet to others here, too. I hope your appt. Tuesday starts you off on a better path, from here on out. Check in with us all when you can, OK? Looking forward to your update! Best wishes, Vee

 
Old 02-27-2006, 06:23 PM   #7
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Re: Lupus

Yes indeed I can relate.. to all, I think, that you said, Sunnie!

Two points: When I was a teenager (I wasn't diagnosed till about age 40), I was in Civil Air Patrol. One day, I was out on the flightline at an air show... and all day affair where we policed the flight area. I was in the sun for probably 8 hours. By the time my parents and I got home, my mother had to walk me carefully up the stairs as I couldn't move my arms and legs from the burns I had gotten. Salves, bed rest, and lots and lots of pain. The point of this story is that I wonder how many lupus patients had an episode of severe sunburn in their past. Could that have triggered the potential for lupus into active disease? I wonder.

Also, I have the shakes and weakness when I haven't eaten, etc., and mine is caused by hypoglycemia. I test my glucose when it happens to watch the pattern, but I've been officially diagnosed with it. I carry glucose tablets with me in case it strikes when food is not available. Just FYI.

Thanks for sharing your story!
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Lupus, Fibro, APS and more!

 
Old 03-02-2006, 04:03 PM   #8
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Re: Lupus

Thank you Susan I really appreciate you input. Well I have been to the doctor now and he said that the test he took for lupus is a new test that is much better and it tests directly for the lupus antibodies. In my case it came back negative. However he did say that he thinks that my symptoms are leaning more towards MS. He is ruling out a few other possibilities and then the testing for MS begins. He told me also that I have Chronic Fatigue Syndrome. So that already explains alot. He said that he is making it his personal mission to get me an accurate diagnosis. But he thinks it is MS. There are so many more symptoms I did not list here because I hadn't really thought about all of them. But they are conducive to MS. Anyways thanks all for your help. Please wish me luck in my journey to finding out what is wrong with me.

Thanks,
Sunnie
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Old 03-04-2006, 01:36 PM   #9
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Re: Lupus

Hang in there. I have had symptoms since the age of 15, diagnosed at 19 and am now 38 and been med free for 13 years. It is not a death sentance just something to learn to control and live with. Always be honest with your doc's and remember, the only stupid questions are the ones not asked. There is going to be a LOT of confusing tests. Ask why and what it tells you. Do not be afraid to ask why ever. Especially when it comes to meds. Also, one of the positive criteria for Lupus is a false posititive on Syphilis tests. It does not mean you have or ever had Syphilis. Has the doctor told you what the criteria are that lead to the diagnosis of Lupus? I am a firm believer in being positive about my illness. There are downsides to it but mostly controlable. Please remain positive and remember, it is treatable for the most part. Learn everything you can about it so you can face it and feel a little more in control.

 
Old 03-04-2006, 05:12 PM   #10
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Re: Lupus

Thank you TammyD I don't know if you ready the entire thread though because my last response on here said that they are now testing for MS (multiple sclerosis). The dr.'s think my symtoms are more conducive to that. I will stay positive though it is hard and thank you for your encouragement.
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