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Old 08-18-2007, 06:18 PM   #1
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catherine352 HB User
I meet critera an need a new dr. will he believe me?

Hello everyone! I am new to this message board. I have and I do know in my gut I have Lupus. I have experienced the symptoms that meet the
criteria, however my blood work came back negative for ANA. BUT-
I am postive for the antiphospholipid antibody. Is that an indicator? My current Dr. started out with
a pro active "lets figure this out attitude" and now dumped me on my butt suddenly without a formal Diagnosis of Lupus and Referred me to a Rheumetologist that is NOT even in the same State! Today, I spent 6 hours in the ER because I had chest pain, ringing ears, dizziness and swelling. I had been suffering with these symptoms since late May complaining to this Dr. Turns out I had a sinus infection! So, there ya go yet another Doctor who I can
add to my "Quak" dr. list. My question is, I need to go to a "smart" Doctor Hospital. The Dr.s in my county are not very bright or so it seems. So I tried to
schedule an appointment with a "big time teaching hospital". Do I have to
manifest symptoms to a new Dr. or if I gave him a history of the symptomatic
criteria I have had will he take my word for it and refer me to a Rheumotologist for treatment of Lupus.? Are there any of you that believe you have Lupus without a formal DX from a Dr.? I heard that one dr. may say you have it and if you switch another may say it is something else. What do I do?
I have been suffering all my life like all of you and I am not getting any younger. With the APS Syndrome I could have a stroke, blood clot or whatever else, and I am not under a drs care. HELP! Thanks

Last edited by catherine352; 08-18-2007 at 06:23 PM.

 
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Old 08-19-2007, 03:20 AM   #2
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: I meet critera an need a new dr. will he believe me?

Hello, Catherine. Welcome! I'm sorry you've had things going on that make you suspect lupus. But because I'm only a patient, my thoughts are only from my personal & limited experience.

I think most rheumies want to see most lupus criteria with their own eyes, to the degree they can, and most run new blood, urine, possibly skin tests, etc. Good ones do ask for old labs, etc. to review.

A good rheumie should take a thorough lifelong history. Have you seen the "sticky posts" (permanent posts) at the top of the Board? One has the criteria for diagnosing & categorizing systemic lupus. You have to meet "4" of that list, but not necessarily all at once. Another has the symptoms & criteria for antiphospholipid syndrome, which you already have a Dx for. Another describes various tests used in Dx'ing lupus (you have to access the separate source cited).

An aside: Did you know that there are other "subsets" of lupus for which you may meet less than "4" criteria? I fell into this "trap" by having the SCLE subset. My rashes were on torso/arms, not face; and my bloodwork results were not the same as those most commonly associated with classic SLE. I also tested negative for ANA, which can happen with the anti-Ro antibody.

In addition to APS, which I think fulfills one criteria, what others do you think you've met? The more concrete, the better for you (you know how I mean "better" in this context). In contrast, for something like fatigue, the dr. has to take your word for it, and a good dr. SHOULD.

Re: antibodies, did your drs. order the lupus-y ones in addition to basic ANA & the tests for APS? e.g., anti-ds-DNA, anti-Sm, anti-Ro, anti-La, etc.? While only a relatively few people benefit immediately from this approach, it can't hurt to try.

Do you get rashes? While a good rheumie or dermie wouldn't diagnose a lupus rash based only on appearance, you could take a picture, which could allow the rheumie to at least ask good questions & then tell you what to do if a new one appears. I think the optimal time to biopsy is on a new-ish rash.

You could also read up, which helps you ask better questions & assess whether you're having "good" appointments, I think. There are several comprehensive hardcovers in most libraries & bookstore. Dr. Daniel Wallace is one author & Dr. Robert Lahita is another. And both should also cover APS.

Did the dr. who diagnosed APS tell you to take anything for it? Dr. Wallace writes in his hardcover that only about 1/3 ever experience a clinical problem. But, gee, in your shoes, I'd want it watched very closely by someone VERY competent! And I'd do just what you're doing: get evaluated for lupus & any other condition which may be more common in APS people.

I hope others chip in soon & I hope you keep posting. Best wishes to you and bye for now. With warm wishes, from Vee

 
Old 08-19-2007, 04:47 AM   #3
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goldenwings HB User
Smile Re: I meet critera an need a new dr. will he believe me?

Hi there catherine,

I speak as a patient with SLE and not as a doctor.

Whilst there is nothing much I can add to what our wonderful Vee has already explained, there is one thing I would like to point out which is because you have APS it doesn't automatically mean you have lupus of any type. APS affects non-lupus patients too.

Thing is though if you definitely have APS, then you should be one some form of treatment to hopefully help prevent anything going wrong. This is definitely something you need to speak to a doctor about before anything else at this stage.

As for the ANA test more than 90% but less than 100% of patients with SLE will have a positive test, but also there are a lot of people with a posiitve ANA that don't have lupus. A positive ANA test can be found in lots of conditions such as Sjogren's Syndrome, scleroderma, rheumatoid arthritis, & mixed connective tissue disease. Therefore a positive ANA test, on it's own, does not mean that person has lupus

The 'usual' criteria is meant to be used as just that, and not as a diagnostic tool in itself. The diagnosis comes with many questions about present day symptoms and past history, and lots of testing. So bear with all of this and hopefully you will be able to get something sorted out with which to work on.

Take care.

goldenwings
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 08-19-2007 at 05:00 AM. Reason: misspelling - tricky fingers today.

 
Old 08-19-2007, 05:56 PM   #4
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catherine352 HB User
Re: I meet critera an need a new dr. will he believe me?

Thank you Goldwings and Veej for taking the time to give me all the info you did.
Veej, I have seen the sticky posts and I do meet the symptmatic criteria. Last year I devloped a red sore behind my ear like a red raised lesion. It spread up my head a little and I literally lost all my hair on that side of my head- completely, came out in my hands over few days. It was terrible and no physician seemed impressed with it. One dr. sited that he though I was under stress and pulling it out my self and wanted me to see a shrink!
I was hospitalized a couple of years ago for cellulitus. Ever since then I developed thes sores on my face that scar me. My face looks terrible.
I started getting these sores on the outside of both my ears and behind them.
They were scabby and would bleed constantly. I have also herpes simplex that breaks out on my ear periodically.( I don't think this is a criteria either ) It has done this since I have been a baby and has always been a mystery as to how I got it. In addition, I have had the achy joints, leg pains since childhood, I was told they were growing pains which I hear is typical. As a teenager my mom finally got fed up and frustrated and my dr diagnosed my with a "chemical imbalance" and Epstein Barr Virus. I had 4 miscarriages due to the APS. When I was pregnent with my third child I had third trimester bleeding and my labor was induced and my daughter was born premature out of fear of still birth. She thankfully is healthy. I have 4 children. Every pregnancy I was on baby aspirin and hospitalized to stop premature contractions and had to be on Magnesium.
I have always been extremely fatigued. My latest symptoms are now dizzy spells (vertigo) and toes that are cold and sometimes bluish. I see "aura"s.
I had a MRI and I have no brain abnormalities however I have 3 bulging disks in my neck, I don't think that is related to this. So, in essense I can trace every single one of these symptoms to lupus. Do you or anyone else know if there is another disease that has these symptoms I told you with APS that is not lupus? I would think my dx is not that much of mystery now as I get older. I just want treatment. As for the treatment for the APS, other than pregnancy difficulties my OBGYN's never informed me to seek out continued care for other medical difficulites this causes. It was only recently that I found out I should be on blood thinners and under a drs care for it. I am taking a baby aspirin regim everyday as my quirky dr. advised. Other than that I am now left spinning in the wind. The only good thing I do like about my current physician is that he said he would in fact continue to treat my pain. Thank God!

I am glad I found you guys and this message board. Please add any other information if it is available. I could use the advise and support. You are all great! Thank you again.

 
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