Undiagnosed?

419 Views 6 Replies 5 Participants Last post by Kenzmadie, May 20, 2008

Layla

Discussion Starter · May 14, 2008

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

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Layla

Discussion Starter · #2 · May 14, 2008

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

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Lily

· #3 · May 15, 2008

Hi Layla,

There's nothing worse than coming out of an appointment feeling invalidated for what you are going through :hug:

It's a shame your other doctor has left. Is this doctor saying your diagnosis was wrong and taking you off meds, not seeing you on a regular basis? If so then it's time to find a better doctor.

If however she is just not jumping up and down because of your current symptoms then sometimes they will do that so we don't stress about them uneccessarily and get ourselves in a worse state. Flares do come and go and from the sound of what has been happening to you it's likely you have had a slight increase in disease activity/flare. Can you pinpoint what may have set this off? More sun exposure often will do it, even in those who are well controlled on medications and seemingly stable. The fact that it settles after a couple of days rest is a positive though. It's when they keep recurring and won't settle that the docs often want to step up medications.

Do keep an eye on things and keep documenting them. It will take a while to establish a relationship with any new doctor. Time for you to get to know them and vice versa. But if you feel it's a lost cause with her then by all means seek out someone who you feel you can develop a much better doctor patient relationship.

love
Lily

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Jirel

· #4 · May 15, 2008

I'm assuming that you can't get another doctor? Have you tried to ask the one doctor WHY they think the tests are all wrong? It seems really strange that a doctor would say all the lab tests are wrong. I had one do that too me back when I was in my early 20s but he didn't even tell me that, just said all the blood tests were fine. Eventually he had to go back and get it retested and admit that the one test was right. To his credit he did at least explain it to me at the end.

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Layla

Discussion Starter · #5 · May 16, 2008

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

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LolaLola

· #6 · May 16, 2008

Hello, I am sorry you have had such a let down. We tend to pin a lot of hopes on appointments, and it is so upsetting.
Lots of people have the same difficulty as you, and you really need someone with the sense to realise blood tests are only a small part of a very big picture.

Whatever way you look at this, you have not failed in any way.
X Lola

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Kenzmadie

· #7 · May 20, 2008

I was diagnosed accidentally. I was losing the circulation in my fingers. My doctor told me there was nothing wrong with me and I just needed to quit smoking. I saw another doctor who referred me to a vascular specialist (since I was only 39 at the time and my father died of arteriosclerosis). He did the bloodwork and sent me to a rheumatologist. If I had taken the first doctor's word for it...well, I'd probably still be smoking, but not have a clue about what was going on with me. I have been diagnosed with lupus (although the "ringer" test, the DNA, was negative, so depending on the doctor, they'll call it lupus or mixed autoimmune disease), sjrogrens (and I think I'll always spell it wrong) and raynauds (probably spelled wrong as well). I am on plaquenil which has helped immensely. Sometimes I have all sorts of symptoms, the rash, swollen joints, night sweats, aches, (I almost always have nightly low grade fevers), etc, but the blood work isn't any different than it is when I don't have these things. Some days I feel like someone put a very large syringe in me and sucked all of my energy out. Days like that its an effort to walk around the house. My rheumatologist doesn't get excited about anything. I'll tell her something new hurts or some other symptom, and she'll say, "Hmm" and write it down. LOL. But, I figure, those things usually go away (my tailbone ached so bad for a year that it was hard to initially stand up from a sitting position...it went away eventually) and I trust that she'll be there for any big problems. Even when I have something seemingly serious (a dangerously low sodium level last summer), they never seem to find the answer to it despite a year's full of tests that only lead to more tests. I guess I'm rambling now. But, I want you to know that I think we all experience what you're experiencing right now....no answers, no explanation, and sometimes little to no validation. I hope you find a doctor that will validate your concerns. In the meantime, there's alway us.

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