View Full Version : I'm So Confused!!

08-08-2009, 09:02 AM
:no: Saw my rheumy for the first time. She said, after a positive ANA, that I probable don't have "active" lupus because it was low positive. Titers were only 1:40. I have severe hair loss, large patches, she decided to treat this. I couldn't care less about the hair loss! She gave me Plaquenil. But I have read that it can cause hair loss?!.

I had written down all my symptoms for her so I wouldn't forget anything, and she didn't even read it. I'm tired of all the pain and no dx. For almost 4 years now. But this is the first time I've had a positive ANA. Oh yeah, she did do additional blood work, DSDNA, etc.

Thanks for letting me scream :wacko:

08-08-2009, 04:08 PM
Hi Danice,

I can imagine how frustrating it must be, not to have a diagnosis. With all the pain and problems you have, it sounds to me that you do have Lupus, but don't take my word for it. It is good, that you got plaquanil, it will help, but it can take up to 6 months. I don't get, that alot of docs don't look at our lists of symptoms, because alot of times these symptoms help with the diagnosis. Hope you get answers soon.


Angel Oliver
08-08-2009, 04:35 PM
oh Danice,

I know how frustrating you feel cause im in the same boat,except my bloods say im all well,healthy :)
Today may feel like a non productive appointment ,but in a little way it was actually the beginning.You have plaquenil.For the little i know of this drug,in a few months time you should begin to feel less pain.This is a good start.The diagnosis will take time, so stay strong.
For me at christmas,well before,they diagnosed me with lupus before bloods came back,the results.Then when the doc got them all negative i think,:) he changed my diagnosis.How stressful a time this has been.I like you are in pain....except i have no meds as ''im healthy'' :) I have a few ailments,but many symptoms of Lupus,even my doc thinks so......so why like you NO diagnosis?
Between us....we will keep fighting.Others will come here n support you through this.
But dont be sad....today is a new beginning.

Love n gentle Hugs
(the healthy one :) )

08-09-2009, 05:31 AM
Amanda & Debbie,

Thank you both for your posts. It sure helps to know others feel as I do. It is so frustrating. The doctors don't agree and I'm suppose to make sense of it. Good thing I'm more educated than a doc, right. ha ha

08-12-2009, 10:33 AM
Hi and ((((hugs))))

I'm in year two of waiting for a diagnosis... having a positive ana at the beginning (Letting me know what had been causing so many years of pain and strange rashes) and lots of other positives that made my doctor say "You have some serious numbers here that point to Lupus and Sjogren's Syndrome. You need to see a rheumatologist"... but the numbers are too low since then when they check so...no dx for me yet either even though I sat in my last rheumy's office presenting a bright red malar rash.

I later tested positive for hereditary angioedema but that's still not a definite diagnosis. However, my pcp says that lupus and the complement deficiency that creates hereditary angioedema, run hand in hand.

The last tests found elevated levels of anticardiolipin antibodies... which freaked me out because that means blood clots. But then after being tested again, having an mri to check for clots, negative results. However, my pcp said that elevated anticardiolipin antibodies are also found in people with lupus...like she said in the beginning with her suspicions of Lupus and then she looked frustrated and asked what kind of specialist will it take to diagnose me finally! She suggested we find an old rheumatologist that won't piddle around and diagnose me...but, lol... I've heard the older doctors do the same thing. They want to be absolutely sure before they'll dx. I can understand that but only to a point.

I had to remind her what she told me before...it takes years for lupus patients to get a dx...and we're only in year two. I'm using that word more now...only...trying to convince myself that this isn't taking as long as it feels. I've been miserable off and on since 1996...but the past four years have been awful and it's only getting worse.

You're in good company here and we all understand how it feels. ((((More hugs))))) Hang in there... eventually we will all get our dx. We just had two here finally get theirs. It happens. It's just often such a pain in the derriere to get there.