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After 5 years, a definite Lupus dx

882 Views 14 Replies 13 Participants Last post by  pennylp
As of yesterday, I apparently am a definite Lupus dx.

For five years doctors have argued back and forth about my dx. Primary Sjogrens was decided on because I had a positve salivary gland biopsy. But my labs were always weird, never definite.

I saw my doctor on Monday and yesterday got a call from his nurse. He wants me to go back to the rheumy from **** again (no, I won't) and when I explained that this particular rheumy didn't want me for a patient, she said "Oh, that was when he thought you might not have lupus, but now it's definite so he will want you as a patient now."

Whatever. I will not go see the man who insulted me up one side and down another. But I do have a definite lupus diagnosis.

Amazing, I feel just like I did when I had Primary Sjogren's! :lol::rotfl::lol::hehe:
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Haha, Sunny, it's just like when you have a birthday and suddenly you're a year older - you feel just like you did the day before, a year younger!

Maybe this more definite diagnosis will mean some treatment adjustments?

So glad you got your Dx, but please get the help you need, as you say your not going back to that rheumy.

take care Lin xxx
Dear Sunny

I am so glad you finally got a final diagnosis of lupus(((((((((((hugs))))).No way would i go back to that kind of a doctor:mad: Please do try to get another one as it is very important to have one that can figure out what is going on with it all.Take care and sure hope you can get to feeling better real soon((((hugs))).

Only a fellow lupie could offer "congratulations" on the diagnosis! wow, 5 years! It took me nearly 2 years and I thought that was horrible!

I hope you live in an area where you can find another doctor. Best of luck to you. Let us know what happens with your treatment and all.

Sonny, so glad to hear that your wondering is now over. I am very happy

for you. Of course, you were always one of us anyway.((((hugs)))).
I must say..we loopies are a warped group!

How right it is that we congratulate on a DX, yet how sad!

A DX is a curse and a blessing as we finally have a name for what is wrong, but now that we know it we have to cope with it too.

Please get a better Rhumy as who want to work with a Dr who is an

Hope you get to feeling better really soon...much love - Stephanie
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."

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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
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That is great that you got a diagnosis! It must feel so amazing to know what is going on... I am still waiting. 19 + years and counting. I have always been told I have "some kind of inflammatory arthritis" but that is it. I am not being treated at all, and my last appointment with a specialist was 2 and a half years ago. But they did give me Celebrex... which I just recently dumped into the toilet. lol I gave up everything two weeks ago... I am so tired of being tired... so I choose to put my head in the sand an except who I am. I am not giving this one more day, one more thought or even one more minute.

But I do like coming to the boards and hearing great news like this for people! It is great. I am so happy for you. There is hope. :)
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.

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Triumphant at last

Hi Sunny

you are a legend :wink2:for all of us seeking d/x. I note that you joined in 2003. You are helping us all to be confirmed in our belief in our symptoms and our determination to be able to communicate to doctors and for them to communicate :)to us in a helpful,open way. Our site here is part of that openess to help one another, using the Search facility,:rolleyes: and our Moderators to somehow push us into action for our own selves/bodies/minds.

Yes, I too believe congratulations are called for in your resolve. Hooray for our site. For so many years I know drs did not help, and in 18months I know know how many of us are fighting for answers .
Hi Sunny,

Good luck finding a good rheumatologist. It is important for you to have one you will be able to work with so you get the appropriate care.

To better days ahead,
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.

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Hi There,

That is great news... now you can start being treated with the right meds and you can relaxe.... It is amazing how some people have to wait so long to get a diagnosis...And then when we get them it is like ok I can relaxe now, I know what it is... My life can move on...

Love Penny
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