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Old 07-11-2009, 11:13 PM   #1
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Does this sound like LUPUS?

Hi everyone. I am 33 years old and feel like I'm 90. I have dealt with migraines for most of my life, but in the past 5 years they have gotten MUCH worse. I am now having them 3,4 even 5 times a week. I am always exhausted, I keep getting weird rashes, run a fever for no apparent reason, have night sweats, swollen glands, hip, back and neck pain first thing in the morning, depression, irritability, mild anemia, hair loss, etc... I did have a "weird" episode where all my joints (fingers, legs, everything) stiffened up and I was in a lot of pain for about a week.. Sorry if I am rambling, I'm just so tired of feeling like this...I am waiting for bloodwork, in the meantime would like to know if it sounds like it is lupus.

Thanks!

Last edited by spunkymama; 07-11-2009 at 11:23 PM. Reason: left out info

 
Old 07-12-2009, 07:24 AM   #2
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Re: Does this sound like LUPUS?

Spunkymama, hello & a big welcome! First off, I'm ONLY A PATIENT, so please take what I say in that light, meaning only doctors can render professional opinions & diagnoses.

Have you see the "sticky posts" ( = permanent info) at the top of the thread list here? You'll find lupus symptoms and diagnostic criteria, and also info on antiphospholipid syndrome (APS), a clotting disorder *sometimes* seen in conjuction with lupus but also possible "standalone".

To read more: there are excellent lupus hardcovers available in most libraries and larger bookstores, written by rheumatologists for patients to (supposedly ) comprehend. Look for Dr. Daniel Wallace &/or Dr. Robert Lahita.

The diagnostic criteria for lupus are layered and tricky. To be Dx'ed with the *systemic* form, you generally (not always) have to meet at least 4 of the 11 at some time, meaning not necessarily all at once. (Think of checking each off in indelible ink once met.) However, there are LESSER forms, sometimes called "subsets", for which you may meet fewer than 4. With this complicated "4 of 11" concept, you can see right off that there's (alas!) no single test that proves or disproves lupus.

The "easiest" lupus diagnoses are probably when blood tests reveal autoantibodies considered unique to lupus (but only two of quite a number possible are considered truly unique) and/or when a skin rash is biopsied and proven to be lupus-specific.

Do you know which blood tests were ordered? (Suggestion: ask for a copy when they come back, for your personal files.)

What do your rashes look & feel like? Have you had them biopsied & subjected to immunofluorescent stain tests? I'm always curious about peoples' rashes because I had multiple kinds of lupus rashes...

To me, based on what you wrote, it makes sense that lupus be considered in the mix of possibilities. BUT, as I said up-front, I'm only a DUMB patient! Because there are other conditions than can create many of the same symptoms, doctors can't always come up with definitive answers on the first rounds of blood tests, skin tests, urinalysis, and symptoms presented so far.

The most important thing to know right now is, if you are eventually Dx'ed with it, that many lupus patients can remain fairly mild, with proper meds and ongoing checkups; and with the better meds & doctors we have today, people with more serious problems fare much better than in past years. So please hang in there, OK? I hope you post more soon & that others chime in soon, too. Bye for now, with my best wishes, Vee (Dx'ed nine years ago, with up's & down's but nonetheless considered stable)

 
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