To those that it took years to get positive on Lupus

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Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 6/21/2007 8:43 PM (GMT -6)   
How sick were you? I've read where some have said it took them awhile to get back positive test on Lupus, so while you waited and continued to feel bad how long did it take and how messed up was your insides?

Regular Member

Date Joined Mar 2007
Total Posts : 153
   Posted 6/21/2007 9:15 PM (GMT -6)   
I didnt have a diagnosis for probably 10 years Veronica. My insides weren't any more messed up because I didnt have major organ involvement. But, my mind was messed up : ) I was convinced that I was a psych case!

I don't think that waiting causes damage really. If you had something major going on inside your body, and by that I mean and organ that was involved, Im pretty sure that your blood work would have represented that.

I think where your at right now, its harder on your mind than your body.

Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 6/21/2007 9:23 PM (GMT -6)   
Hi Veronica:

I've had lupus for 19 yrs now. I wasn't officially DX'd until 6 years ago. I've been sick on and off through out those years. I was jerked around from yes to no I don't have lupus. I've had blood tests that were positive and then negative.

I have to say the past six years I've been my most sickest. I'd say since 2005 I've been my ultimate worse. I now have organ damage in several places. I was sick enough that I took some very toxic drugs, mainly cytoxan, and now I've got a rare blood cancer. My doctors feel that my taking the cytoxan increased my chances of getting this type of cancer.

Now, I'm very very sick. The two diseases are feeding off of each other. My MDS is expected to worsen, until I'm going to be terminal. Once my bone marrow is working less than 20% then I'll be put on a bone marrow transplant list. I'll be expected to die no matter what they do at that time, so they'll attempt the transplant.

I've read several of your posts, I'd like to encourage you that lupus is different in all of us. That lupus can be from very very mild to very severe. Try not to focus on the bad of the disease. I know you're very worried about your temps. I've discussed this in detail with my Rheumy, Internist, and Infectious Disease doctor. They all have said that lupus can cause low grade fevers often. Unless your temp is more than 100.5 most doctors put the temps down to our disease and the inflammation in our bodies. My doctors feel that it doesn't do lasting damage if I run about 99.7 or even 100.2.

I hope that you can get some results and answers soon. If I can answer any more questions please feel free to ask. Wishing you well and pain free days.

Take care,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

Veteran Member

Date Joined Dec 2006
Total Posts : 708
   Posted 6/21/2007 9:44 PM (GMT -6)   

It took YEARS.  I had all the symptoms of pain, etc. and it took until last September to get the diagnosis.  I am still battling with trying to get treatment, i.e. meds, from my rheumy.  Up until last September I had gotten to the point where I thought it was all in my head and was about ready to admit myself to a psych ward.  I can't begin to count the number of doctors and tests and stuff I had to endure before the diagnosis.  Still going thru the process of doctors and stuff but at least know what the diagnosis is now.

Diane (ocean1)
Muscle disorder 2007; Lupus Sept. 2006; IBS 2004; Chronic Hives 2002.
Medications:  Allegra and Zantac; Lunesta, and Ultram PRN.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 6/21/2007 10:22 PM (GMT -6)   
I felt terrible for years, starting in 2002 and my doctor found my problems one at a time. After a year of suffering I was dx with Celiac (2003), that was after losing 40lbs and being sick every single day for over a year. After that dx I thought ok now I will start feeling better any day now but that day didn't come for a couple of years later. In 2005 I was finally dx with lupus and started new meds that over another year or so would help me get my life back. I still have flares and still pay for it if I over do it but I am a lot better than before.

One very important part of the dx process is finding the right doctor for you, there are so many docs out there that only look at things in black and white. They want to see labs coming back positive or organ involvement right away before making a decision. I can understand it in a way, they want to be certain that lupus is what you have as it's so hard to dx, it's a disease of 1000 faces not everyone has the same symptoms.

Take care

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Magnesium Citrate and magic mouthwash (as needed for mouthsores)

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 6/21/2007 11:22 PM (GMT -6)   

Since there is no one test or scan or x-ray that will help a doctor give someone the diagnosis of lupus, doctors have to put together all the pieces of a complicated puzzle. And when they do, I think they're reluctant to label someone with lupus until they're absolutely positive that their patient does in fact have lupus. They realize that the diagnosis will never be erased from your medical records. If they misdiagnose a patient and give them the wrong meds, and the patient has a bad reaction, they can be sued. It took me years before I understood why, when I kept telling my doctors that I believed I had lupus. Looking back, I think they knew too, but they weren't trained to sit down with me "I believe you do too, but I don't know for sure and at this point waiting isn't going to hurt you." It was so absolutely maddening. I know what you're going through. You feel sure you have it but you don't get validation from your doctors.

There are steps you can and should be taking now if you aren't already. First is to make sure you're going to the best rhumy you can get into, and even more importantly, make sure he or she takes the time to talk to you and explain things to you. Sometimes doctors don't talk to the patients who don't demand that extra attention because they are pressed for time. But I've found that once they realize that you are trying to better understand your illness so that you can better care for yourself, they'll take the time.

Surely you've read all of us talk endlessly about the necessity of keeping a log of all the symptoms you have or have ever had. I break mine down into (1) symptoms I'm having now; (2) symptoms I've had in the past (3) symptoms that come and go; and (4) duration of my flares. I give it to my rheumy in typed outline form - as short and precise and inclusive as possible.

At the end of that list is the list of (1) my meds; (2) my other doctors/names/phone numbers and which ones I want reports to be sent to; and a list or prior illnesses, surgeries, and hospitalizations.

Then comes my list of questions. I know that anytime I walk into a doctor's office without my written list, my mind goes blank. I also know that I've never been in a doctor's office with a list, however long, when the doctor wouldn't answer every one of my questions.

I also write down everything the doctor tells me because when I leave a doctor's office my mind goes blank once again. Call it brain fog, a senior moment, or what you will, but I just don't remember any more.

By doing all these things you're taking your health into your own hands. The more educated you become about lupus and other autoimmune diseases, the more you and your doctor will get from your appointments. And make his or her nurse your new best friend. Many many times I've gotten help from a nurse in a phone call that would have taken me a month to get from a doctor.

I also believe that for myself, taking all these steps made me feel a little more in control, or maybe I should say that prior to taking these steps I felt totally out of control, scared, confused, and lost.

If you're not bored to death and buried after reading this, I'll answer your question. It did take years for my diagnosis. However when I had my first major flare and couldn't get out of bed for 3 weeks, my ANA was positive for the first time, so I don't believe waiting hurt me. It would have tough if I had been having real bad flares without a compassionate doctor on board to help me.

You're doing a smart thing be joining this forum and becoming a part of this family. I didn't have the courage because I didn't have the diagnosis, so I didn't think I'd be welcome or taken seriously. I was so wrong. It's people like you who need this forum more than anyone. The rest of us have our ups and downs but we seem to make it one day at a time.

Come to us for comfort. We'll be here for you.


Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 6/22/2007 3:41 PM (GMT -6)   
Thank you all for answering me. You all have been so helpful.

I have no Rhemy. Can I get one without dr saying I need one?

You know when I came to this forum it was just about me but now that I've talked to other family members and a few have said that they too have been to dr because of Lupus and was told everything was fine and my younger sister has been asked if she has been checked it is no longer just about me it's about my family.

We have a great grandmother at first I was tld by my mom she died of measles soon after childbirth then I was told no one is sure why she died, then my grandmother both on my mom's side died at an early age but she had tb and a bad liver due to her drinking but I have to wonder what they past down to the family and being that there were 10 children born from great grandma and 9 from grandma and lot of family seperated because of the deaths what all we don't know.

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