View Full Version : symptoms of lupus but no lupus disease

06-02-2005, 08:16 PM
I have been told that I have symptoms of Lupus but I don't actually have the disease. I would really like to talk to someone who has had the same diagnosis. If so, post a message please with detailed information. I have ANA anitibodies, small #. Symptoms do and have included sun sensitiviity, RA, hair loss and possibly confusion. Thank you.

06-03-2005, 05:33 AM
Nothing I've read indicates that there is a definitive test for lupus.

06-04-2005, 12:08 AM
Hi Ilovesam;
Just as there is not one cause of lupus, so, too, there is not just one set of signs and symptoms that develops. In fact, symptoms can vary enormously from one patient to another. Some symptoms are clearly related to involvement of a particular organ. Other symptoms are called ?systemic? because they are more general and usually cannot be related to any objective finding like a blood test or rash. Of course, most patients have only a few all of the possible symptoms. Lupus is a chronic condition, so that symptoms may be present for many years; however, it does not tend to ?progress? to involve more organs over the years. Patients with the discoid or the subacute cutaneous forms of lupus do not usually develop systemic lupus, even after many years.
When a patient is told that they have "mild" lupus, this generally means that the organs have not yet become involved in the disease even though some of the symptoms of lupus are present.
Your treatment choices for lupus (systemic lupus erythematosus, or SLE) depend on how severe your symptoms are, whether your organs are affected, and how much your symptoms are affecting your daily life. Your treatment plans should be tailored to your individual needs and will change over time, as the disease flares or ebbs. There currently is no cure for lupus.
You may be able to control your symptoms with self-care and medication. Self-care includes learning as much as possible about lupus, maintaining good communications with your health professional, and developing a healthy lifestyle. Medications that may be used to treat lupus include nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, antimalarials, immunosuppressants, and biological therapy.

Initial treatment

The goal of treatment for mild lupus is to prevent symptom flares?when fatigue, joint pain, and rash worsen. Maintain a schedule of regular checkups with your health professional, instead of waiting until your disease flares. When flares do occur, the goal is to treat them rapidly to limit any damage to body organs.

Treatment for mild lupus includes:

* Avoiding the sun. If you must be in the sun, cover your arms and legs, wear a hat, and apply broad-spectrum sunscreen (covering both UVA and UVB rays) with a high sun protection factor (40 SPF or higher) to protect your skin.
* Applying corticosteroid cream for rashes.
* Taking nonsteroidal anti-inflammatory drugs (NSAIDs) and getting plenty of rest for mild joint pain and fever.
* Taking antimalarial medications to treat fatigue, joint pain, skin rashes, and lung inflammation.
* Taking low-dose corticosteroids if NSAIDs aren't effective in controlling your symptoms.

08-07-2005, 08:16 PM
I also had a very positive ANA and some signs of lupus but since 2001, my diagnosis was Undifferentiated Connective Tissue Disease. This can go into full blown lupus which mine just recently did. Started having seizures in April and after many, many tests found that I have organ threatening lupus of the brain. Was taking methotrexate and plaquenil for a time. Now I have to do cytoxan IV therapy once a month for 6 months. Just make sure you see your rheumatologist regularly and keep a log in case symptoms change. Good luck!

08-08-2005, 05:40 AM
Welcome ilovesam!

Saysusie and catlady have given you great information. all i can do is add to it. YOu see my moniker -- it is because I wear a wide brimmed hat from sun up to sun down if I am outside. Also the long sleeves, sunscreen and slacks. Sun can make SUCH a difference-- and not a good difference.

As said above, watch and monitor your symptoms. Keep a diary. When you go to your doc, take it with you so you can review it and your questions. EXPECT to have the doc spend time with you. Did you know the average doc spends only a bit over 5 minutes with each patient? The rest of the time yo're wit the nurse or waiting. I always make sure I have questions and information ready - and end up talking with my doc and my rheumy longer than that. After all, it is MY health we're dealing with!

Hugs, and welcome to a warm and friendly place...

Roni Shawn
08-16-2005, 02:51 AM
A while back, I was on Oxycontin. I went off of it after 2 mo of use. Then I started this zapping in my head, and anywhere else it wanted to go. It was constant, but would come and go, every few seconds. The ER told me that it was withdrawls. But at first they thought I was having seizures. They didnt do ANY testing on me to see if it WAS seizures. I still have the zapping, but it is not all the time anymore. I wonder.......

To add to the comments about having symptoms and no lupus:
My ANA was 160 to 40. They told me that anything over 40 was considered to be Lupus. Then someone ELSE told me that it wasnt that high, that I didnt have Lupus. My ESR is elevated, etc. Boy, this is difficult to diagnose. But I am officially a Lupus patient now. As of 3 yr ago. I think I had it when I was younger too. But back to the ANA. My ANA doesnt show anything over 40 now. So what to think about that, I dono.
What does Homogenous mean?
But now this is what is abnormal:
RA TITER <11 (in range) <15 (Reference Range)

__________________________________________________ __________
CALCIUM 8.0 L 8.2-9.7
RBC 4.00 L 4.12-5.30
HEMATOCRIT 36.3 L 37.7-47.0
MCV 97.4 H 82-97
MCH 33 H 27-32.2
WBC 11.2 H 4.3-10.4
PMN (what is this?) 88 H 42-76
BANDS (??) 9 H 0-7
LYMPHS (??) 2 L 29-49
NEU (??) 10.9 H 2.5-8.5
LYM .2 L 1.0-3.8
ESR 26 H 0-20
__________________________________________________ ___________
Then there was this:
__________________________________________________ ___________
This is what was borderline-close to being too high or too low:
__________________________________________________ ___________
__________________________________________________ ___________BILIRUBIN .2 .1 - .2
PROTEIN 6.7 6.2-8.3
URIC ACID 5.8 2.6-6.0
HEMOGLOBIN 12.5 12.4-15.7
PLATELETS 185 150-200
EOS 1 0-7
MONO .1 0-0.8
EOS .0 0-.8
BASO .0 0- .2
__________________________________________________ ___________
__________________________________________________ ___________
PH 7.0 5.0-7.0
__________________________________________________ ___________This is DEFINATELY not everything on the lab results. But I put the things that would most be important. I am TRYING LIKE HECK to study and to find anything that would help my diagnoses and help MYSELF learn about my diseases. There are ?? by the ones that I dont know about, and what they are for. If there is ANYONE that can help me with this, I would appreciate it. I go to webmd to find out what they are done for, but I dont get the answers I need from that site. If there is one that you all know of, I can do that, too. I like to research. But I am about researched out. When I put in the ones that are borderline or close to borderline, I wanted you all to see. I feel that if it is THAT close to the borderline, maybe it is important?! I dono. Maybe I am overreacting. I am told that I do these days. But what else am I to do? I am OCD on trying to figure things out for myself, because I have nobody to help me. I am SERIOUSLY at the end of my rope, people. I need prayer, somethin serious. PLEASE respond ASAP. You can even write to my email addy. ronishawn33or@hotmail.com. I need some help. I know that I cannot end my life due to my beliefs in God. But I want to. I cant help it. I do NOT want to live anymore. I am too much of a problem. Is this normal? Anyone here feel the same? What can I do? I am pleading here. I feel like a baby. I hope that nobody thinks that I am the only one going thru this. I know I am not. I just need people that ARE going thru it, so I can know more....Make sense to you? It dont to me...LOL ....It is almost 4 am...So I am not thinking clear. I dont want to go to sleep tho. OMGosh...Help me please.... :( :( :( :(

Roni Shawn
08-16-2005, 02:52 AM
My test results and such didnt come out the way that I typed them out. So please bare with it. I hope you can understand it all....Thanks for the effort for reading and helping me out everyone...

08-16-2005, 08:13 AM
Roni Shawn, I just wanted to let you know that you are not alone and that I and many others have felt deep despair after becoming ill and waiting for a diagnosis and someone to believe us. My labs and initial symptoms were dismissed by my first rheumy so I switched and I am a little more happy with my new Dr. It's still frustrating because I don't always feel listened to or validated. Just know that all of us at this forum are here for you.

06-19-2006, 04:00 PM
I am in the same boat you are, I have had symtoms for years sun sensitivity, rash on my arms, fatigue, severe pain in my joints some in my muscles, and cold hands and feet. my ana was negative but my rhem. gave me a positive for mild sle, however im in pain all the time, I am on plaquenil and pain pills, muscle relaxers, and lunesta once in while to get a great nights sleep. I cannot take nsaids, or steroids, saysusie gave me some meds to talk to my dr about. Good luck and keep your chin up your not alone. always greeneyes58

06-20-2006, 12:06 PM
roni shawn-
I am so with you...i just feel so frustrated with all of it! I was diagnosed with Lupus almost two years ago, but I am starting to question my diagnosis. I was recently told that I am b12 deficient and possibly have Pernicious Anemia....and I wonder if this is cuased by the Lupus, or if I dont have Lupus at all...and that it was PA all along..since PA is am autoimmune disorder as well with similar syptoms....dont all these AI disorders just overlap and confuse us all??? It is so frustrating. I have tried to make sense of my blood work, and that is just as frustrating as well since Dr.s dont explain them to you. I have to call my dr and request they send them to me just to see them! So i thank you for posting yours and trying to make some sense out of them!! I think we have all felt the way you are feeling, but you have to keep up hope. We are all here to share with each other as much information as we can....so please continue sharing, it is truly a great help!

If anyone has any information on PA and lupus I would love to hear about it.