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Old 09-25-2009, 02:50 PM   #1
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quick question from a newbie

I was recently diagnosid with Von Willebrands Disease (about 2 years ago) I am going back to see my Hemo on Tuesday b/c I am bruising again. BUT does anyone think that there is any connection between VWD and Lupus?? I have always thought I had arthritis. My joints ache. especially hips and knees. but it will also radiate throughout the whole leg. to where sometimes I just have to lay in bed. About 2 years ago my doc sent me for a chest xray for possible pleurisy. I had such a pain in my back and right chest I thought I broke a rib. That last for a couple of months. but the xray came back fine. I also have had a butterfly rash BUT it looks like sunburn or that I am flushed etc. and doesnt last that long? But yet every year when I go for my physicals everything comes back fine??????

DO you think I should mention anything to the Hemo, is there anything else she can test for?

 
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Old 09-25-2009, 07:51 PM   #2
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Re: quick question from a newbie

Momto, hi & welcome. Do you know how why were Dx'ed with Von Willebrands? Meaning, from the very little I know about it, it seems that it's hard to diagnose. Did you start with only bruising? Were special tests performed? Did you get copies of your results?

Lupus is also hard to diagnose. Look at the "sticky posts" = permanent info at top of thread list. One lists the 11 ACR criteria. To be Dx'ed with systemic lupus (SLE), you generally must meet 4 of the 11, but over time, meaning not necessarily all at once.

You'll see that some (not all) criteria for SLE involve bloodwork. So, YES, there are blood tests that may be run where lupus is a possibility. One is ANA, but it's considered only a threshold test, because it can be positive in multiple disorders, or simply due to a passing virus, age, or a family tendency. (Meaning, in & of itself, ANA can't diagnose anything specific.)

Then there are a ADDITIONAL more specific autoantibody tests, only two of which are considered VERY specific to lupus, anti-ds-DNA and anti-Sm. But there are many other autoantibodies possible! As an example of how that can work, I have lupus but tested positive for only "anti-Ro", but didn't test positive for the two very specific ones listed in the ACR criteria. It would be a *rheumatologist* who would be best-versed in this area of medicine.

Also, a blood clotting disorder called APS (antiphospholipid syndrome) is seen in conjunction with lupus, but it can also exist "standalone". There's a "sticky" on that, too. I think it can cause purpura = purplish bruise-like marks, and many other issues as well, per the sticky.

Also, there's a sticky with resources, suggesting rheumatologist/authors many of us here swear by.

I'll stop now, to let you absorb... Obviously I'm only a patient, so please read the above in this light. That said, what you asked strikes me as a really sensible line of inquiry... Meaning, if Von Willebrands ALONE doesn't explain ALL the various things you're experiencing, then I absolutely think you SHOULD try to get your drs. to think hard about other things! Bye for now, with my best wishes to you, Vee

 
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Old 09-26-2009, 08:14 AM   #3
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Re: quick question from a newbie

Thanks VeeJ for the infoo. I was diagnosised after I had surgery. I wouldnt stop bleeding and bruising. I also needed a blood transfusion. I had always been a bruiser and when I was younger I use to get nosebleeds. My periods have always been HELLISH! But I have had surgeries in the past and never had this issue??? I had called my hemo yesterday b/c I started bruising alot again and I also noticed bluish/light purple (about the size of a pencil eraser) dots under my arms. SO I got a little concerned. I go in on tuesday for bloodwork to check all my levels and I guess I started to get thinking about all my other symptoms. The one that bothers me the most is the leg pain and its not constant but when it acts up its painful!!!! I didnt know if since I was getting my blood done, if this was something to ask my Hemo or me general doctor?

 
Old 09-26-2009, 09:01 AM   #4
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Re: quick question from a newbie

Momto, you could ask ALL the drs. you encounter, really, in the sense they're all M.D.'s, some with specialties & some not.

I *think* certain platelet disorders (seen in lupus but also seen "standalone") can cause heavy periods, bruising, little red spots (petechiae), excessive bleeding from gums, etc. Track down Dr. Daniel Wallace's lupus hardcover to learn more. Most libraries have his book.

I think you should make a list of every symptom you've noticed, take it in with you to every appt., & ask the drs. point-blank if your current Dx explains your list. Whether it does or doesn't, only competent drs. can say, so I hope you keep asking!!! If you don't get good answers &/or you feel worse, I hope there are other drs. you could try. Keep us posted, OK? GOOD LUCK. With my best, V.

 
Old 10-01-2009, 11:54 AM   #5
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Re: quick question from a newbie (update)

Well I saw my Hemotologist on Tuesday. WHile she was checking my body for bruising, she noticed I had what she called a "Rash" on my legs. She immediately asked me if I had Lupus? She said the rash is called Livedo Reticularis (sp) She is testing me for anti ( i cant remember the spelling) which is a clotting disporder BUT she doesnt think I have it due to the fact the I was already diagnosid with Von wille brands. ( the exact opposite) She also took my ANA. Being that I have joint pain she is sending me to a Rheumotologist. SO I will guess I will see what Happens next?????? I am a little scared.

 
Old 10-01-2009, 03:36 PM   #6
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Re: quick question from a newbie

Momto, the "anti" could be antiphospholipid antibodies? Look at the "sticky posts" at top of thread list for more info on antiphospholipid syndrome & on lupus. People can have either or both. Main thing is that now you have TWO interested specialists reviewing everything, to make sure your Dx matches your symptoms---which means you'll have the right *treatment* made available to you. I hope you post more after reading the "stickies". Sincerely, Vee

 
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