It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Lupus Message Board

Is Lupus difficult to diagnose?

Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 08-04-2007, 10:41 AM   #1
Join Date: Apr 2007
Location: Highlands Ranch, CO, USA
Posts: 67
Jill1221 HB User
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!


Sponsors Lightbulb
Old 08-04-2007, 08:29 PM   #2
Join Date: Feb 2004
Posts: 5,493
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
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

Old 08-05-2007, 05:46 AM   #3
Join Date: Apr 2007
Location: Highlands Ranch, CO, USA
Posts: 67
Jill1221 HB User
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 .


Old 08-12-2007, 07:24 PM   #4
Join Date: Aug 2007
Location: US
Posts: 7
SingleGirl HB User
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
Join Date: Apr 2007
Location: Highlands Ranch, CO, USA
Posts: 67
Jill1221 HB User
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.


Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Lupus w/o + ANA? windycity Lupus 6 03-28-2007 03:27 PM
Questions about Childhood Lupus Childhood LUPUS Lupus 7 06-10-2006 06:40 AM
Could my kidney problems and joint pain be lupus? imaworrier Lupus 6 01-13-2006 08:55 PM
Does ANA-negative lupus exist? Blessed4Life Lupus 4 08-21-2005 06:42 AM
Could I have Lupus? creinha Lupus 13 06-13-2005 06:18 PM
Lupus flare with normal labs? cvc70 Lupus 4 05-20-2005 04:15 PM
Criteria to Diagnose Lupus AngelicBrat Immune Disorders 1 11-21-2003 04:37 AM
Tumid Lupus Erythematosus (TLE) info Mara Lupus 0 09-09-2003 04:49 PM

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 05:27 PM.

Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2016 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!