After 5 years, a definite Lupus dx

I hope others reading about my dx will find it "hopeful" in the way only someone with a slippery disease would understand. Going over blood test results last week, my dr. noted that I had low white count and high sed rates going back to the early 1990's when I had several bouts of pneumonia and urinary bleeding. All, he said, indicative of active lupus at that time. But nobody put 2 + 2 together.

At the same time, I've never had the kind of ANA tests that would jump out and say definitively that I have lupus. I guess what this says to me is that it's important to be your own best detective.

Make a list of all your symptoms, illnesses and daily physical problems. Keep it. Make certain specialist medical types who see you also see the whole list. You never know -- maybe the urologist or Gastro doc will see a pattern. Maybe a nurse practitioner will have seen it before and say "aha, this points here...."

I knew my body was struggling for years, but I interpreted it as personal weakness. Everybody around me worked, handled a household and lived on a few hours of sleep a night. I should be able to, as well. Everybody around me bloomed on vacation, finding energy to run and play all day out in the sun. When I collapsed in the tent in tears by noon, surely I was being passive aggressive and trying to ruin my family's vacation.

These are the stories we tell ourselves. We overcompensate, push harder, lie, beg, self-medicate with food or alcohol or .... whatever. And when we go to the doctor, sometimes our blood hides the truth. I don't know why. I have no medical explanation whatsoever. What I have is my story and I own that completely: bloodwork apparently pointed to autoimmune disease for years, but never the tests that are the ones doctors require for most dx. So I'm weird. Sue me.

I hope everyone out there searching for answers will not stop without finding what s/he needs. Someone will take you seriously. To quote my favorite, now defunct television show: "The truth is out there."

Sunny

HI Sunny,
Great to hear you have got a diagnosis at last. I got mine last year after 10 or 12 years of feeling like I must be making it all up too.
Its strange how everyone treats you with much more respect after the diagnosis.
My doctor now listens intently to my worries and treats me like Im a normal intelligent woman. Not so in the past. In the end you begin to doubt yourself too.
My Rheumatologist virtually disowed me as he kept saying he didnt know why I had so many other symptoms as he had diagnosed me with RA and I wasnt presenting with all the typical symptoms of that. You think being a Rheumatologist he might have had some idea of Lupus.

Ive since changed to a new one who was the one who got me diagnosed instantly. I wouldnt go back to the old one now either.
Im sure I nearly died due to him taking me off all medication overnight as he wanted to see what would happen if he took me off the medication. Huh..
Its taken me 2 years to recover.

Glad you will now be taken seriously too.
Good luck,
Sal x

Sunny,
I understand exactly how you feel, I too am still diagnosed with Primary Sjogrens "with a Lupus tendency". It has been almost 4 years now and while I have many of the Lupus criteria, lab and symptoms, I don't have the DS-DNA, SM or "Lupus antibodies" (I do have positive ANA, SSA, Lupus anticoagulant and anticardiolipin, and thyroid antibodies). I don't have any major organ involvement, just skin and joints and of course the dry eyes, mouth.

I pretty much am OK with the Sjogren's dx, but still in the back of my head I suspect Lupus. I am being treated like they would for mild lupus (Plaquenil, NSAIDS, baby aspirin, Evoxac) so am OK with where I am at on that front. But the question/uncertainity still lingers in the back of my mind of it this might be lupus and is it quietly damaging my body in ways that maybe aren't showing up yet....In some ways it would be a relief to know and possibly be more open to looking at a little more aggressive treatment or at least be more proactive to try to stop a flare quickly. It is like I am always walking on eggshells, wondering if any new symptom is just "normal aches, pains and fatigue" or the start of something I need to get on top of. At least by knowing that you are indeed dealing with SLE you can decide how you want to approach new symptoms.

I was starting to feel like it has been 4 years, this is probably going to stay just Sjogren's syndrome, but I guess this can keep developing even if it has been a long time. I hope you don't develop any new problems or issues along with the new diagnosis! Good luck to you.

Nancy

Willow, I'm so sorry you can't get the treatment you need. And I understand the urge not to give this any more time or precious energy. The diagnosis didn't change a single thing for me. The only bright spot is I now have something concrete to take to the new rheumy when he hits town next month, and the blessings of my gp (who's actually an internist).

I don't know where you live or what you've tried, but is it possible that a sympathetic gp would give you plaquenil for a while to see if a year on it makes a difference? It might make a happy difference for you.

As for acceptance, I agree that sometimes it's better for the heart to just accept what is and go from there rather than trying so hard to scramble to a higher place. I think I found acceptance a couple years ago when a doctor told me "look you've got nerve pain and you always will. There's no treatment and it's just going to get worse. Now deal with it."

Or words to that effect. But just that blunt. And yes, he did say "deal with it".

Acceptance is one of the steps of grief. I find that grief for me is a cycle. I hit acceptance and then find myself back at anger or denial. Bargaining? Well what would I bargain with? "I'll never eat sugar again." Right. God and I both know that's a lie, :lol::rotfl:.

Anyway, I wish you all the luck and health and good things that life can bring. Do come back often and let us know how you're doing. We care. I care.

Hugs,
Sunny