Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Sha on November 28, 2010, 11:50:33 AM

Title: lupus screening quiz
Post by: Sha on November 28, 2010, 11:50:33 AM
This is a 16 question screening for lupus. It gives you a percentage of probability for having lupus.

I am not dx with it, but going to a rheumy in January to be tested for other ai diseases.

I tested 10/16 and 63%. I had to answer no on the lab questions cuz I don't know them yet.
What's your score...

http://arthritis.about.com/od/lupusthebasics/l/bllupusquiz.htm


Sha
Title: Re: lupus screening quiz
Post by: Shani on November 28, 2010, 12:13:15 PM
12/16 was my score, or 75%.:)
Title: Re: lupus screening quiz
Post by: Hypermobius on November 28, 2010, 01:49:33 PM
38% for me.
Title: Re: lupus screening quiz
Post by: Patze on November 28, 2010, 02:18:32 PM
11 out of 16 for me, and I think that it's 68%.


Patze
Title: Re: lupus screening quiz
Post by: Daisy1234 on November 28, 2010, 02:19:16 PM
13/16 or 81%  I haven't been diagnosed with Lupus yet but just primary and severe Sjs.  I wonder if the result is indicative of Lupus symtoms in my case or of severe SJs.  They have alot of similarities from my experience.
Title: Re: lupus screening quiz
Post by: LizPetillo on November 28, 2010, 02:32:34 PM
7 /16     Your score is 44%
Title: Re: lupus screening quiz
Post by: Kerrikins on November 28, 2010, 07:46:11 PM
75% for me. I've had many symptoms of lupus but no anti DNA so far.
Kerrikins
Title: Re: lupus screening quiz
Post by: eyeamdry on November 28, 2010, 07:57:33 PM
I scored 11/16 and that's 69%.  So many of the questions were also associated with SJS--I really don't think I have lupus, but I guess it doesn't matter as I'm getting all kinds of treatment.
Title: Re: lupus screening quiz
Post by: irish on November 28, 2010, 09:06:26 PM
75% for me---I also have many symptoms of lupus and my immunologist says that I sure remind him of a lupus patient. My DNA test is still negative. He just keeps doing it every 1-2 years to see what is up. It won't change any of my treatment unless I would have kidney problems.Irish ;D
Title: Re: lupus screening quiz
Post by: SLEEPY101 on November 29, 2010, 03:06:32 AM
75% I also scored 75% on the SJS test -very interesting, thanks for posting
Title: Re: lupus screening quiz
Post by: babycakes on November 29, 2010, 09:29:37 AM
13/16 for me.  81% i think.  Ive been diagnosed with a severe case of primary sjogrens at the moment but my rheumie says these diseases are very similar in symptoms, particularly sjs and lupus.
Title: Re: lupus screening quiz
Post by: harlin on November 29, 2010, 03:28:52 PM
11 out of 16 for me. Just what I need another illness. Don't I have enough?????????
Title: Re: lupus screening quiz
Post by: Jules48cats on November 29, 2010, 04:03:54 PM
14 out of 16  88%,  I had just been diagnosed with Lupus last Tuesday and my doctor did not really discuss it with me, except for the fact that I am suffering from severe anemia. 
Title: Re: lupus screening quiz
Post by: kwolfsheimer on November 29, 2010, 04:20:24 PM
81% for me.   ???

I think Lupus might be something I have, but the biggest issue is that although my symptoms started with a rash years ago, it was not diagnosed as Lupus then.  I don't have the rash now-- but I do have the hair loss.  I do have several overlap symptoms-- but then again, I do for rheumatoid arthritis and scleroderma.  So many of these autoimmune diseases mimic each other.  It's hard to get a real firm diagnosis, unless something changes and a symptom becomes more apparent.
Title: Re: lupus screening quiz
Post by: kellyptyler on November 29, 2010, 04:39:41 PM
88%
Title: Re: lupus screening quiz
Post by: slang on November 30, 2010, 10:09:21 AM
50% - No one ever knows for sure!
Title: Re: lupus screening quiz
Post by: meow on November 30, 2010, 02:36:19 PM
44%.
But I already know I don't have it, at least according to the labwork.
Title: Re: lupus screening quiz
Post by: sugarbugar on November 30, 2010, 03:47:57 PM
Mine was 81%.  I haven't been diagnosed with Lupus but Severe SJS.  However, I only scored a 76% on the SJS test.  Hmmm...
Title: Re: lupus screening quiz
Post by: CK on November 30, 2010, 04:29:45 PM
50%
Title: Re: lupus screening quiz
Post by: Katybarstool on December 01, 2010, 02:32:43 PM
75% for me, which is the same as my Sjogren's score. I don't have lupus, but I do have a diagnosis of Sjogren's.
Title: Re: lupus screening quiz
Post by: twilite on December 01, 2010, 04:08:11 PM
44%.
Title: Re: lupus screening quiz
Post by: Autoimmunity on December 01, 2010, 11:35:19 PM
This is a 16 question screening for lupus. It gives you a percentage of probability for having lupus.

I am not dx with it, but going to a rheumy in January to be tested for other ai diseases.

I tested 10/16 and 63%. I had to answer no on the lab questions cuz I don't know them yet.
What's your score...

http://arthritis.about.com/od/lupusthebasics/l/bllupusquiz.htm


Sha

I got exactly the same score.  I have thought I have lupus for a long time, but when I had the ana it was negative.  The other labs I have not had.  I do go to a rheumy in a few weeks as something is clearly wrong with me, I just don't know what.  I think it is very rare to have lupus with a negative ana??, but I do have a lot of the symptoms.  I do have the butterfly rash, severe joint pain, I have photosensitivity, sun makes me tired, my eyes are very sensitive, and makes my skin feel like it is on fire, but I think they mean it causes some sort of skin rash?? not that I am in the sun enough to really know. 
I truly wish they had lab tests that you took (like a pregnancy test) that states you either have (insert disease here) or you don't.  Clear cut.  Not, well, your labs are negative as usual, but you can't move your joints, stay awake for more than 5 minutes, or remember your own name a lot of times.  :P
Title: Re: lupus screening quiz
Post by: Sha on December 02, 2010, 07:23:47 AM
autoimmunity~

I hope you get some answers! Did you take the Sjogren's test and the others I posted? The one that has all the quizzes is:  

http://sjogrensworld.org/forums/index.php?topic=14091.0

Good luck with getting a dx!:)

Sha
Title: Re: lupus screening quiz
Post by: Sheltiemom on December 02, 2010, 01:49:25 PM
19% for me.  But the "yes" answers were also consistent with Sjogren's.

Sheltiemom
Title: Re: lupus screening quiz
Post by: Sha on December 22, 2010, 11:43:55 AM
Since I posted this and took the test last, I found out I had a positive ANA and looked up what Raynauld's was (so that's what ya were trying to explain), .

I now test at 15/16 and 94%....things that make you go...hmmmmmm :o

Detest yourself after you find out your labs etc.

Sha
Title: Re: lupus screening quiz
Post by: amberjolie1 on December 22, 2010, 08:00:57 PM
8/16, 50%.
Title: Re: lupus screening quiz
Post by: smartbnt on December 26, 2010, 04:37:51 AM
2/16. guess i still need to go to a doctor to be sure.
Title: Re: lupus screening quiz
Post by: Elizabeth87 on January 19, 2015, 07:08:07 AM
My answers were 14/16 and have an 80% chance I have it. I have been too numerous drs and pretty much get laughed out of the office. I hate this. I got sick one night and went to the ER and I am not sure if I was diagnosed with it or not. She asked my family history and I told her that it runs on both my dads and my mothers side. All together I have 5 family members that have been diagnosed by a physician. She wrote on my discharge papers that I was seen by her for SLE. I had a copy of my labs and she suggested I get a new dr so I can begin treatment. I went to my a new dr. He laughed I tried to explain my past history as well as family. That internist told me that my family was probably misdiagnosed and I said to explain my past history of UTI's and Kidney infections he said it didnt matter. He just wanted to know what was happening to me right then and there. I tested positive for ANA pattern Homogeneous with a Titer of 1:160. not sure if that is high or low since ive seen others that are in the thousands. I wasnt having a flare at that time. I have been tested ANA+ every time. I never get a negative ANA. I have not been tested for any antibodies that would show abnormalities for lupus. I dont know why these drs dont want to help me. I hate this. That new dr I dont plan on seeing him again. He was nice as a person but anytime i tried to tell him my history he would shoot me down and literally just say no. he said I listen to too many drs and im just frustrated.   They also messed up on my papers. I weighed in at 188 his print out said I weighed 145 then my discharge papers weighed 188. they also mixed in some other patients papers. Ug they are unorganized. I just want someone to hear me. I am honestly positive I have lupus and no one will help other than that ER dr but she only works for the ER. I also have High liver enzymes and nothing has happened to treat that. I was told I have fatty liver. I read about that and there really isnt much to do just wait and see I guess. But if nothings done it can deteriorate. I think anyways. 
Title: Re: lupus screening quiz
Post by: cccourt1942 on January 19, 2015, 07:35:38 AM
Elizabeth 87:  6 months ago I would have thought something was wrong with YOU.  Not today.  I moved last summer...and cannot believe experiences with doctors where I live now.  Keep searching.  Physicians are out there who know and care; it's hard to find them.

Oh..and I scored 75%.  I have never been tested. I started thinking I had Lupus about 25 years ago.  My husband shamed me for reading about a "disease" saying I was wishing for it.  Had I read thru the book I would have discovered Sjogren's and could have learned my symptoms had a name. 

Husbands and doctors? You know what's coming next:  Can't live with 'em, can't live without 'em. (except I am widowed now!!   ;) )
Title: Re: lupus screening quiz
Post by: Sleepy In Seattle on January 19, 2015, 08:56:21 AM
I was 63% too - I was diagnosed with it several years ago based on a lot of symptoms which are NOT in the quiz, plus positive blood tests on almost every factor listed  :(

By the way, only something like 40% of people with Lupus end up with the rash, so that's not necessarily a good indicator.

Judging by what I have learned over the years, I'd say that quiz leaves a lot to be desired in terms of phrasing of questions and updated information on how the disease works.

Lupus is a chameleon and looks very different in different people. Also, if you don't catch it until all or most of the symptoms in that quiz show up, you're in bad shape!!!! It's important to recognize it and get treatment BEFORE a lot of those things happen.

Fortunately, if you're in treatment for Sjs, the treatment is basically the same as for Lupus, so it's kind of killing two birds with one stone. Though of course you still want to keep on top of everything and know what's going on.
Title: Re: lupus screening quiz
Post by: Carolina on January 19, 2015, 09:52:20 AM
I've had doctors test and test me for Lupus, since I was 22.  I don't have it, but I often appear to have it.

As far as I can tell, the treatment for Lupus as an autoimmune condition is NOT different from the treatment for other autoimmune conditions.

The biggest things particularly related to Lupus are kidney and lung involvement and usually then  require treatment by specialists to deal with the damage done by the autoimmune autoantibodies attacking those organs.

My niece died after suffering for 16 years with Lupus which never went into remission.  The last 5 years she was on dialysis because her kidneys had completely stopped functioning.

She died because her body could no longer handle the dialysis necessary for her to live.

I have known many people who have been extraordinarily successful while diagnosed with Lupus (Dean of the School of Education, successful attorney, etc.) and others who have not.

The degree of difficulty for surviving autoimmune/immune mediated conditions, I think, is the amount of damage to systems and organs that occurs.  Having an autoimmune/immune mediate condition, in and of itself, is not  as important as how much damage the condition is doing.

I am fortunate that the biggest damage that has been done for me is my profound neuropathy (and perhaps my arterial lining damage which causes my CAD).   No doctor will state clearly that my Immune Mediated condition destroyed the nerves in my legs and causes my Small Fiber Neuropathy, but in the absence of any other determined cause, and in the clear presence of Immune Mediated problems and a diagnosed condition, I have to say that I'm sure.

I can't walk well, and I have stents in my heart.  But compared with the horrific damage that can be done by so many autoimmune/immune mediated conditions, I have gotten off easily with a bit of Interstitial Cystis, Meniere's and moderate deafness, etc.

I scored very low on the Lupus test, of course.  One of the questions is about blood test results.  Even if I had the damage to my system of the type caused by Lupus, for me it wouldn't be called Lupus, since my basic Immune system attacks me, without antibodies and without blood factors that show up on tests.

Hugs,  Elaine (I feel LUCKY).


Title: Re: lupus screening quiz
Post by: susanep on January 19, 2015, 01:24:46 PM
I scored 88%, and have lupus. I never know how to answer the one on hair loss. I don't know how much hair loss is too much. Can any of you give me an idea on that?

susanep
Title: Re: lupus screening quiz
Post by: litliwlowa on January 19, 2015, 03:46:19 PM
31% here.

One question listing all the tests? Most of those have not been run on me
Title: Re: lupus screening quiz
Post by: Chris on January 19, 2015, 04:22:12 PM
94%
Title: Re: lupus screening quiz
Post by: Scottietottie on January 19, 2015, 04:37:35 PM
63%

I have a dx of lupus/sjogren's overlap. Bloodwork suggestive of lupus - symptoms suggestive of sjogren's.
Title: Re: lupus screening quiz
Post by: SjoGirl on January 19, 2015, 05:06:38 PM
75%
Title: Re: lupus screening quiz
Post by: irish on January 19, 2015, 06:59:06 PM
As mentioned many times, the Sjogrens and Lupus are kissing cousins so even doctors have trouble differentiating between the 2 diseases. It should be noted that the lupus is known to also cause depression and psychosis on a more severe level. This can be one symptom that can send up a warning signal.

I also think that most people with Sjogrens will have a good many of these symptoms. There are numerous tests out there that we can take to indicate one disease or another, but they can be so confusing for all of us. Still have to wait till the blood work and the doctors can pull everything together.Irish
Title: Re: lupus screening quiz
Post by: Head2Toe on January 19, 2015, 10:49:26 PM
10/16 - 63% - although I OFTEN wonder if I have vasculitis.  Every doctor I've seen over the past few years has looked at my  hands (red blotchy palms) and has commented that they are 'unusual' - but no one has suggested any tests.  Some have asked if they turn blue as well - no they don't.  I do get white blotches as well but they are variable (change all the time); the red spots never turn white because they are more like stains on the skin surface rather than under the skin.  It's very frustrating because it's pretty clear to me that *something* is going on that is NOT normal :(

Oh - a number of colleages at work have commented on the colour of my hands.  I'm not embarrassed, but relieved to know that other people seem to be able to see what I see, even if for some reason it doesn't click with doctors  ???
Title: Re: lupus screening quiz
Post by: mshistory on January 20, 2015, 02:03:35 PM
13/16 - 81%

I have been diagnosed with both SLE and SjS. I'm not sure there's much difference except labs (particularly anti dsDNA) between severe SjS and lupus and sometimes I think I have really severe SjS because my labs are so textbook for SjS.