View Full Version : 3 years of testing positive, now I'm not????

05-27-2009, 05:51 AM
Okay, I'm so stressed out. I was diagnosed with Lupus three years ago. I was in denial and argued with the Rheumatologist that maybe it was something else. He made a huge point of saying that the bloodtests were clear as well as all my symptoms. He even redid the blood work to make me happy.

I've been tested two more times since then and the results were the same. He has had me on Plaquenil, anti inflammatories and steroids at different times over these three years and it seems I barely get a break from the pain and fatigue. Maybe a week here and a week there.

So, I went back to see him and he did the blood work again because when he looked at me (it had been a while since I had been to see him because no matter what he does I still hurt) he said my skin and hair look like someone with thyroid problems.

I went yesterday for the results and guess what? No thyroid problem and everything in my blood work came out in normal range???? What the heck does that mean? He states now that his diagnosis is unspecified autoimmune disease. I still have symptoms even though the blood work says nothing is abnormal...has this ever happened to anyone else?

He says that the fact that I have the symptoms and no pain killers or even the steroids stop it that I have some sort of autoimmune disorder and my joints may be being damaged so he wants me to start Methotrexate. Lord, this makes me nervous, especially since the blood work says I'm okay (I don't feel okay and apparently I don't look okay).

I'm so frustrated and depressed over this. Not that I want to be sick, of course I'd give anything to feel like the old me, but I hate that I am sick and now I don't really know what it is.

I guess I just want to know if this has happened to anyone else and maybe get some uplifting words of wisdom....thanks!

05-27-2009, 06:17 AM
Hi CathyJ...

First of all welcome..warm hugs.

Second..your situation unfortunately is all too common. Lab tests are only part of the puzzle, not the diagnosing tool only...the other part is clinical evidence, symptoms. It is common to have test come back negative all the time, or at some point.

Some say it indicates the activity of our disease, but by our symptoms we feel otherwise, eh...It is common to have tests that are not indicative to our symptoms...

You could very well still have Lupus...he just doesn't want to make a hard diagnose. Though I know it isn't comforting not to be diagnose, your symptoms should still be treated.

Has he ran other tests to rule in our rule out other autoimmune diseases..like Rheumatoid arthritis, Sjogrens..before he starts prescribing medication?

How is your sleep? Sleeplessness, restless sleep could aggravate your symptoms. Stress is a bring contributing factor to our pain...

Keep looking for your wellness..hugs.

05-27-2009, 06:19 AM
I have had a negative test after several postive test. what test did he exactly do? there are several test not just and ana test to determine what you could have. i am no expert there are people here that might be able to help you better.
the advice i have is ask which ones and make sure all were done if not go and do the ones you didn't have done.

the autoimmune system is so complex you will one day have postive test and one day not. i also think depending on flareing or not if they show up in blood.
like inflamation should of been one of the test. i hope you get the answers you need.
good luck:yes:

05-27-2009, 06:31 AM
thanks for responding..

Yes, he did the whole spectrum. He says I definitely have an autoimmune problem. I have all the symptoms of Lupus plus Sjogrens but both came back negative. I am also having some other symptoms that are more reminiscent of Fibromyalgia.

I love you guys and this forum!

05-27-2009, 07:17 AM
I don't understand how Dr's can "un-diagnose" us after having had a negative "whatever" on some test. If you get a definite diagnosis of Lupus, you either have active Lupus, or it is in remission, but since there is NO CURE for Lupus, you can't just magically not have it anymore. Of course, there are people who are diagnosed with the wrong disease/disorder. It's all quite confusing and frustrating. There seems to be an awful lot of so called healthcare professionals who cannot grasp the basic facts of Lupus.

05-27-2009, 09:36 AM
I tested positive twice and then one big test from a different rheumy and it's not Lupus and/or Sjogren's. It was thought I have both for about 7 months. Then it was c1q deficiency. Then I had elevated anticardiolipin antibody, and after another test I don't have it. But the doc said I do, we just need to break the tie?! She also said I have the c1q but we need to test for that again as well. One day she said Lupus and the deficiency run hand in hand and the next she claimed she never said that at all...even though those were her words to hubby and I. And my primary says that's true. My sister has every marker for lupus but one and her specialist has yet to diagnose her. The specialists are making my head spin. I can't imagine being diagnosed and three years later told that's not it. That's so frustrating! I'm so sorry.

BUT my new pcp says that many doctors are only academic doctors. They depend on labs way too much with diseases that don't always show up in blood work. She told me to give it anywhere from 2 to 6 years. She said that's the norm for the final diagnosis. So the diagnosis I'm still sitting on is, something autoimmune. I often get the feeling that this disease is so evasive that no doctor really wants to touch the case. If it doesn't show up on all their labs, they're afraid to say one thing or another for some reason. Hang in there. I'm assured that we do eventually get a diagnosis. I don't blame you being nervous about the methotrexate. I would be too. Maybe get a second opinion about that would help?

05-27-2009, 09:48 AM
There seems to be an awful lot of so called healthcare professionals who cannot grasp the basic facts of Lupus.

Exactly!!! Or they're afraid to treat the patient because what if they're wrong and get sued over it. You know? If they can't pull it out of a textbook and be certain... good grief! What a crazy merry go round it becomes. Makes me feel like I have to screen every doc I get in the future..."And so doctor, if my labs come up negative, how would you react to that and what would be your next step?" I wish we could look for doctors in a format kinda like that old tv show bachelor and bachelorette...but doctor and doctorette! "Doctorette number two, my labs say I have lupus one day and the next they say I don't...what do you do?" Hey, I wonder if there's a network that would buy that idea!

05-28-2009, 08:26 AM
It is frustrating. I guess I am lucky that he at least believes I have issues. I've heard of some folks who's doctors think its all in their head. I am where you are with a diagnosis...I have something autoimmune going on. (and he was confident in that)

I have scoured this forum for info from people taking the methotrexate. At first it was really scarey but then, the more I read, the more it seems like it might be okay. I dropped off my prescription and will pick it up tomorrow. I'm not going to rush myself...when I feel I can I'll try it. I would love to feel better.

05-28-2009, 09:07 AM
Hi, I have a sister who was diagnosed with lupus, and then years later tested negative, but she has it still. I unfortunately, have had negative tests all this time, but still have all symptoms of it. My Rhuem is treating me for seronegative Lupus, I have had constant inflammation, in cns, joints,skins,connective tissue, hair loss, fever, hypertension... I should also say, I read that its possible if you have taken steriods over a long period, that your test can say negative. I think thats what happend in my case, because i was treated with prednisone high doses 2 years b4 tested. Sorry your scared! i understand! I was on Methetextrate, for 7 months, it helped alot with joint pain. Hope you have a great day. Kathy

05-28-2009, 09:49 AM
Let me get this straight you tested possitive three times they treated you for lupus maybe the negative results is because the treatment worked at least on your blood. I have had this happen to me too. I wouldn't be to worried about a neg blood test the medications you take can effect the results you doctor should know this. Be presistant about your symptoms if you don't get the right answers from one doctor go to another one till you get relief. Thats where i am at now.


05-28-2009, 01:02 PM
AWWW, Cathy you are in my heart and my thoughts. This can be frustrating but you hang in there!!! You are staying on top of it, thats within your power so GOOD for YOU!!!!!! Never give up never surrender!!!! Thats from a movie but the name slips my sloppy mind at the moment!:wacko: We are here for you Cathy!!!!!!!XXXXXXXXXXXXX