[Layla]

Hi all. I have been quite discouraged over the last few weeks. I have had several bad days here and there but seem to recover after a couple of days rest.

I have had numerous skin infections (and I'm not saying that is a direct symptom, just weird) and then developed a petechiae rash (not very bold) on my arms, torso and legs. I have had some veins surface and bleed on my legs. I have a mottled pink rash that looks as if it is under my skin on the underside of my arms, torso, etc. I have a red coloring on my cheeks, neck and chest (my "perma-burn") which has also appeared on my arms.

I went in to see my rhuemy the other day only to get brushed off. I felt like I was trying to sell my symptoms! Unfortunately, the rhuemy that diagnosed a mild case of SLE (based on an ANA test from my PCP that came back speckled and a bit high along with a positive ANA and DS dna test from his office) has left the area. At that point I had very bad symptoms - all characteristic of Lupus. My current doc seems to think that the tests from the lab were not accurate (?) and since she didn't see the symptoms herself.... It's like it didn't happen.

I have been "fine" for a while now, taking care to stay out of the sun, rest, etc. My tests since I got "well" on steroids in 2004 have come back negative. She explains away any and all of my issues as if they were nothing. She even said that my platelets were low on my last CBC but that is probably an error too. What about this rash all over me? Petechiae can be a result of a low platelet count. So evidently the labs here are terrible and I'm plain crazy.

I'm wondering if these test come back positive and I had strong symptoms then, but took meds to get out of that really bad flare, if it just goes away at some point. I haven't read anything about this, but I get the feeling that my doc has this idea. I've been taking plaquenil since 2004.

I don't want to have this. I want to play outside. Any insight? As much as I don't want this, I don't want for someone to treat me as if I'm fabricating it all.

Thanks,
Layla

 

[Layla]

by the way... I broke my foot in the summer of 2004 that seemed to kick off the lupus festivities. Had to have surgery and a plate screwed in place. Miserable experience. Could this be an isolated event? Just a response to that injury and stress? Could it be that was all there will be?

I HATE GRAY AREA! and doctors that don't support patients!

layla

 

[Layla]

She told me that the testing is done more accurately where she is from. (?) Of course, during the appointment I was so blind sided that I didn't ask flat out what the flip she was talking about. And if she wants to say I never had it and don't now, then fine. I will run in the sun. But she tells me she can't say that either.

I had 9 out of the 11 and a positive ANA and ds anitbody. I don't stress about my symptoms, only about feeling like I'm crazy. And now I have a low platelet result (and petechiae and a mottled pink rash) but she suspects that test is inaccurate too. So I guess anything that points to anything is inaccurate despite any symptoms.

I'm sorry. I'm so frustrated. I don't want this crap! I went from hyper-energetic-pom pom waving-can do anything type of girl to this. And that's ok too. I've accepted that but don't tell me its not anything. I berate myself when I don't feel up to doing my normal things. I don't need any additional help by taking away my "reason."

Again, sorry for the rant. I can get a different doctor. I plan on getting my records next week and seeing someone else. I have thought about an immunologist due to my recurrent infections. I don't know if those blood tests and symptoms can occur after one major event (breaking my foot/surgery) or if that means lupus is always there.

Thanks for reading (listening) to my gripes. I am sure my husband appreciates it too. It's comforting to have a place to go where, like the theme song to Cheers, "everybody knows your name..."

Thanks,
Layla