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Old 08-22-2007, 02:31 PM   #1
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MissBecky82 HB User
Confused about Lupus test. Can someone help?

Well, I have been having joint pain and muscle pain for awhile. My doctors and I both think it's because I am going through Xanax withdrawal but I recently had a butterfly type rash so I kind of got scared that I had Lupus. I am a hypochondriac by the way! Anyway, we did some blood tests for Lupus and she said that I am negative. She said my score was 33 and anything over 100 would be positive. Does this sound like the right kind of test? Should I ask for more testing or am I being crazy? Thanks in advance.

Last edited by MissBecky82; 08-22-2007 at 02:31 PM.

 
Old 08-22-2007, 05:33 PM   #2
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goldenwings HB User
Re: Confused about Lupus test. Can someone help?

Hello there,

As you say maybe you are having withdrawl symptoms resulting in muscle aches and pains and so on, but if you are not happy with anything then a full examination should take place. You cannot and have not imagined a rash that is most obviously visible can you ?

I have had SLE for more than 30 years and that type of scoring system is totally new to me. I want to, without being rude to the doctor as I don't know her, say that I think that this is a weird way of giving you answers to your questions - using a scoring system in this way !! Also to give the impression that lupus can be diagnosed with one lot of tests !! There should have been questions about your past medical history, your present symptoms - all sorts of other things. If you do think you have anything going on, I would defnitely advise you to request a visit to a lupus clinic/doctor.

The other thing I would say is that don't look up symptoms of lupus - or indeed other illnesses - in books or on the internet. Some of the information is old and can be scarey reading at times - so I believe. If you have questions come here and ask. I am sure that someone will be around to help you, it is a great forum.

Hope your other symptoms ease off for you soon. If I can be of futher help, let me know.

goldenwings
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 08-23-2007 at 12:17 PM. Reason: marshmallow fingers hee hee !!

 
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Old 08-22-2007, 05:55 PM   #3
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Re: Confused about Lupus test. Can someone help?

Hi, MissBecky. Alas, I'm with Goldenwings in not being able to fathom what test(s) your dr. is referencing, thus the #'s cited don't ring any bells. Have you read the "sticky posts" at the top of the thread list? You'll find info there on lupus and APS. And the one about "Test Results" contains a separate resource where multiple lupus blood tests are described at some length.

You could ask for a copy of your labs also, for your own files. This never hurts to do---plus you could post more specific info, with the names of the tests that were done.

Just curious: are aches & pains known possible problems in Xanax withdrawal?

I hope you post again soon. Bye for now, with best wishes, Vee

 
Old 08-23-2007, 04:36 AM   #4
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Re: Confused about Lupus test. Can someone help?

Thank you everyone. I had a quick look at that website and maybe this is what my doctor did:

Quote:
Test: ANA, FANA (Fluorescent) - Anti-Nuclear Antibody

What test is for: An antibody against the nucleus, or central controlling part of each cell. All organs are made of cells and all cells have nuclei. ANAs have four basic patterns describing the way they look under the microscope. The patterns are "diffuse" (the whole nucleus lights up), "peripheral" or "rim" (only the ring around the nucleus does), "speckled" and "nucleolar" (two very specific spots light up).

What a positive test means: Almost all patients with lupus have a strongly positive test (still positive even when diluted more than 100 times, commonly expressed 1:100). Many normal people also have positive tests, usually less strong (1:10-1:30). The "diffuse" and "speckled" patterns are common in lupus, but are also seen in other diseases and normal people. The "peripheral" pattern is relatively specific for lupus. The "nucleolar" does not often occur in lupus. A positive test means lupus is a possible diagnosis.

What a negative test means: A negative test usually means that a patient does not have lupus, or that lupus is in remission. However, most patients in remission do not have negative ANAs.
The secretary on the phone told me my results were direct 33 or something like that. The doctor wasn't the one who talked to me. I'm going to go see if I can pick up the lab results today. Does anyone have any thoughts??

By the way, Xanax withdrawal is INFAMOUS for joint pain and muscle pain. I do think I am going through that because when I take the Xanax, all the pain goes away and this didn't start until after the Xanax, but I still want to be on the safe side.

Last edited by MissBecky82; 08-23-2007 at 04:40 AM.

 
Old 08-23-2007, 05:49 AM   #5
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realisticchic HB User
Re: Confused about Lupus test. Can someone help?

I think getting a copy of the lab results and seeing for yourself would be best. I hope you find some answers soon. BTW not all Lupus patients have positive ANA. There are ANA negative types of Lupus, and sometimes different medications can cause negative ANA and the disease itself can fluctuate between positive and negative ANA. So, the ANA is not a very good determinant of who has Lupus. Veej can give you loads of good information on this, as she has experienced it first hand. Also when I was DXD and experiencing organ involvement, my ANA came in at only 1:40 speckled. I had been using large quantities of topical steroid lotion for a few weeks prior to the testing, the Dr. said that might be why it was not a higher positive. Take Care

 
Old 08-23-2007, 07:45 AM   #6
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MissBecky82 HB User
Re: Confused about Lupus test. Can someone help?

You guys are scaring me. I have all of my lab results. Here is what my ANA says:

ANA w/Reflex if POS (ZANAD)
ANA, Direct 33
Reference range: 0 to 99
Unit: U/mL
Negative <100
Equivocal 100 - 120
Positive >120

Is there anything else I should be looking for? I have my RA, Lyme, CBC, TSH, Uric Acid, Creatinine, Electrolytes and Hepatic Profile.

 
Old 08-23-2007, 12:28 PM   #7
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goldenwings HB User
Re: Confused about Lupus test. Can someone help?

Hi miss becky,

I know for sure that nobody, including myself, has any intention of scaring you. We are all giving you our opinions which are not medical opinions, but as patients with lupus. All tests done are relevant to the person having them done and cannot be compared to others who have had them done. We are all different. I can apprecaite your worries though and hope we can reassure you in some way.

The thing is though having a positive ANA does not man you have lupus for definite, there could be some other automimmune problem going on. Approximately 95&#37; of patients with SLE will have a positive ANA test, but the majority of people with a positive ANA test do not have SLE. A positive ANA test can be found in many conditions, including Sjogren's Syndrome, scleroderma, rheumatoid arthritis and also mixed connective tissue disease. Many healthy people will also have a positive ANA test. Therefore a positive ANA test on it's own does not mean that person has lupus.

As we have said the best thing to do if you are scared and don't feel that you are getting the info you need from us, you must ask your doctor about anything that is really bothering you. We are here to offer support and none of us are in a position to tell you what you might or might not have for definite. We are not allowed nor in a position to do this, nor would we

As I stated myself previously to you all blood test results have to be used alongside previous history, present symptoms and so on. This is actually backed up by a passage you cited in a previous post:-

"While ANA tests are diagnostically important, test results must be always be interpreted in the context of the clinical symptoms and presentation of the patient".

Hope this helps and you are feeling better today.

goldenwings
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Last edited by goldenwings; 08-23-2007 at 12:47 PM. Reason: misspelling

 
Old 08-23-2007, 03:05 PM   #8
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Re: Confused about Lupus test. Can someone help?

I just found this site last night. I have a very rare form of lupus. It is tumid lupus and is confined to the skin. I still have exteme fatigue and when I am broken out, the area aches pretty bad. I take plaquenil and ranitidine. I also take atarax for the itching which is also bad.
I have found only 1 other person with this type of lupus. I have had it almost 6 years and it took 3 years to get a diagnosis.
When I was reading messages on here, I saw one where someone had asked if plaquenil could cause a rash and itching. Perhaps that person has the same type of lupus that I do. I still itch and breakout but it is not for as long or as bad as before I started the medication. I live in the Deep South and it is at least 100 degrees or more here every day. I do stay out of the sun. The heat is almost unbearable.
I would love to hear from someone with similar symptoms, etc. I hope I can be of help to others.
Thank you.

 
Old 08-23-2007, 04:31 PM   #9
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Re: Confused about Lupus test. Can someone help?

Bentley, Hello & welcome. I've read about tumid lupus but don't know anyone with it. Living in the South can't be easy if you are photosensitive. Mine were annular SCLE rashes, and I have to really watch it, too. So I wear hats, cover arms & legs, use SPF 32 under makeup, & avoid midday sun; but there are still times that I get too much. It's very hard, I agree---I can sympathize. Anyway, glad you found us & hope you read & post often. Take good care, from Vee

 
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