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Old 08-04-2007, 10:41 AM   #1
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Is Lupus difficult to diagnose?

Hello - I have had some weird symptoms the last 4 months and have been through a battery of tests. I consider my symptoms to be MS-like: dizziness, muscle weakness, ringing in ears, numbness and tingling among others. My question is this: my neuro ran a bunch of blood tests including ANA, HIV, Lyme. He said that all of the blood work looked normal. Would it be pretty apparent if I have Lupus? Any insight is greatly appreciated!

Jill

 
Old 08-04-2007, 08:29 PM   #2
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Re: Is Lupus difficult to diagnose?

Hi, Jill. Alas, lupus can be quite hard to diagnose. Symptoms & bloodwork famously wax & wane. And symptoms can vary greatly from person to person, and even from flare to flare. It takes some people years to get answers.

Maybe not surprisingly, milder patients are often much harder to Dx than, say, someone with protein in her urine, joint pain, a facial "butterfly" rash, positive ANA, & positive anti-ds-DNA or anti-Sm autoantibodies. i.e., when someone has symptoms & test results like these that SCREAM lupus, it's far easier.

There are three permanent posts, labelled "sticky posts", at the top of the thread list. You could read them & see how these stack up against your symptoms & also against the tests that were already run. (Also, it's a good idea to ask for copies of your tests, for your personal files, just in case.)

I had numbness & tingling, too, probably from anemia, along with a raft of other things which built slowly over many, many years. Even when I started getting lupus rashes, which should have been unambiguous, I had enormous trouble getting answers, despite seeing suburban GP's, rheumies, dermatologists, gastroenterologists & urologists. I finally took myself to a teaching hospital rheumie & got the help I needed very quickly.

Anyway, I hope you post more after you read the "stickies". Meanwhile, sending best wishes! Sincerely, Vee

 
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Old 08-05-2007, 05:46 AM   #3
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Re: Is Lupus difficult to diagnose?

Thanks Vee. It doesn't look like my symptoms match up very well with SLE. I am just trying to keep an open mind and looking for new avenues to pursue since my MRIs have come back clean. Well, whatever is wrong with me is clearly difficult to diagnose since I still have no idea what it is! Thank you for your reply .

Jill

 
Old 08-12-2007, 07:24 PM   #4
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Re: Is Lupus difficult to diagnose?

I love how VeeJ said "a raft of other things"...that's a cool mental picture to have when thinking about this stuff.

About getting diagnosed, I'm about to re-enter that world and to be truthful, it's the most anxiety provoking thing I've ever experienced. I first remember being sick at like 13... not being able to uncurl my fingers in the cold and hips popping when I would play, etc. By 17, I was reacting to the sun, had extreme fatigue, and my joints had started to give out. At 19, I went a week w/a 102 fever and sores all over my upper body. By 21, after losing hair, developing sunsores, and battling terrifying fatigue, I heard that it was lupus.

However, I only heard that it was lupus once and heard not lupus at least twice... so, you know... who knows what it is? General practitioners sort of lean toward lupus since my grandmother died from it and my mom has it now. I also have great aunts w/RA and discoid lupus.

It's a curse not knowing what it is because it makes me afraid to go to the doctor. I have new weird stuff popping up monthly but I ignore it. I don't go in for back pain until I'm peeing blood and I don't go in for ear ringing until I can't hear... I'm terrified that they'll tell me nothing is wrong and it's all in my head... so I wait until i have some kind of proof to me that it's more than just my head.

Wahtever it is for either of us, I understand your confusion. The last few years, I had bouts (especially when I was much thinner) where I would have odd reactions to hot/cold. Normal warm water would feel like a thousand stinging bees on my feet/legs and cold/ice would do the same to my hands/fingers. Anyway, like she said, you could build a raft out fo the stuff that happens and doesn't add up. I guess it's just part of the package.

Sending hugs and support your way. be well

 
Old 08-15-2007, 07:59 PM   #5
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Re: Is Lupus difficult to diagnose?

Hey SingleGirl ~ I don't visit this board much since my symptoms don't really seem like Lupus but I saw your sweet post and just had to say thank you. I never knew about this whole population out here with all of these problems and not enough answers! I hope that you find a brilliant and wonderful doctor that can get you started feeling better. My symptoms really aren't that bad right now, just completely nervewracking. I have grasped at every straw I can find and still no idea. I have given up (and restarted) gluten, dairy, red meat even tonic water (I thought maybe it was quinine poisening)!!! It was at that point that my husband told me that I officially lost it. At least something is official lol.
Good luck to you in your search and wishing you better health in the future.

Jill

 
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