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    Old 02-07-2005, 05:15 PM   #1
    tinav
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    Lupus or what?

    Im hoping someone can shed some light on my situation. In the past ten years I have had numerous strange health issues including a rash on my upper chest, lower arms and occasionally on my face and scalp. This seems to occur more in the summer. My joints will swell and hurt so bad at times I'm unable to climb the stairs. I have had three positive ANA's each reading 1:160 and speckled. My CRP is 10.4 and I was just told my anticardiolipin was extremely high.
    Everytime I go to the doctors they all believe I have Lupus but when I go to the rheumatologist they say they are unable to diagnos my problem as lupus due to other test being negative. They all believe something is going on but no one seems to be able to give me any answers.
    Recently my right lower leg and began to swell and hurt. They sent me for a doppler but did not find anything.
    I hate to keep going to the doctors because it seems like I'm riding a merry go round.
    tinav

     
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    Old 02-08-2005, 02:18 PM   #2
    Donte
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    Re: Lupus or what?

    Tinav - How many rheumatologists have you been to? I would go find another one. Do not give up getting a diagnosis and treatment. I know it's a pain, but the persistence pays off when you finally know what's wrong with you.

    Good Luck!

    Donna

     
    Old 02-08-2005, 03:22 PM   #3
    tinav
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    Re: Lupus or what?

    Hi Donna,
    I've been to one rheumatologist. It just gets very frustrating going to the doctors and being told they believe it is Lupus but when not all the test they take come back positive they dismiss you and I end up still feeling like crap. My husband is even getting frustrated because he can see how I have been feeling. Thanks for your reply. I was ready to give up all together.
    Tina

     
    Old 02-10-2005, 07:04 AM   #4
    Donte
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    Re: Lupus or what?

    I'm not sure what other tests they want to be positive. I was diagnosed with only having a low ANA, arthritis in my hands, wrists and feet, hives type of rash all over my body, swelling of my hands and feet, as well as some other things I can't remember right now. Did you take steroids for the rash and, if so, did it go away with the steroids? Or did the rashs last for more than 24 hours? My doctor said that more than likely if the rash lasts for more than a day and goes away with steroids, then it is probably autoimmune. Also, which joints hurt? If your right wrist hurts, does your left wrist hurt as well? Symmetrical joint pain can be an indicator.

    Good luck and keep me informed.

     
    Old 02-10-2005, 07:33 PM   #5
    diinin
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    Re: Lupus or what?

    As far as I know, there is no test that, by being negative, can rule out lupus. Even anti-Sm and antiDS-DNA are often negative in people with lupus. If they are positive, they can help to diagnose lupus, but by being negative, they indicate nothing.

    You need to find a rheumy that understands lupus. Most of them don't!

     
    Old 02-11-2005, 06:00 AM   #6
    Donte
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    Re: Lupus or what?

    I agree with diinin. Many of the doctors don't understand it. Although I'm sure that some of them just want to be very careful not to give someone this label for insurance purposes. It could make things difficult for future benefits. But even if they suspect lupus, can't they treat someone as if it is lupus and at least tell the patient that's what they believe it is but they just don't want to officially diagnose it yet??

     
    Old 02-11-2005, 03:49 PM   #7
    tinav
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    Re: Lupus or what?

    I wish I could find a doctor that understood Lupus. It seems like when I go to a regular general physician, they seem to understand more. There are not very many rheumy's were I live. In fact I had to drive over 40 miles to see this one.
    As far as my joints. It seems like they all are hurting when I have these episodes. One wrist may hurt more than the other but they all hurt and lately I've been getting these strange hard bumps appear on my finger joints when they are hurting severely and it takes weeks for them to go away. They dont appear to have any fluid in them because you cant pop them.
    I know that insurance will be a problem because my current insurance company is already trying to pull a pre-exsisting clause on me. I looked at the bill the physician sent to the insurance company and the ICD-9 code they put on it was Lupus but yet she told me that she could not give me a diagnosis of Lupus at this time until more of the test come back positive, but no she didn't offer any medication. I've been becoming an Ibprophen addict.
    Tina

     
    Old 02-11-2005, 03:50 PM   #8
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    Re: Lupus or what?

    Oh yeah I forgot to tell you that I have also had several episodes of spilling protien and blood in my urine.
    Tina

     
    Old 02-11-2005, 06:05 PM   #9
    Donte
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    Re: Lupus or what?

    I know what you mean. Even though I live in Houston, it seems that there aren't many rheumys that are convenient and good that are on my insurance plan. And when you live in Houston, it seems it takes an hour to drive wherever you're going because of the traffic.

    Are the bumps on your fingers deep like they are coming from the bone or are they on top of the skin? The blood and protein in your urine is not good. Do they want to run any follow tests soon to see if that goes away?

    I can't believe the ICD-9 was coded as being lupus and yet they aren't even telling you that it's lupus or treating you like it's lupus so you can at least start having some comfort!! Is your insurance denying the charges since they are saying that it's pre-existing?

    Well, I truly hope that they start giving you Plaquenil or something so you don't have to rely so much on the Ibuprofen. Maybe even a low dose of Prednisone for a short time in order to get you feeling normal quickly.

    I'm so sorry you're going through this. I know how frustrating it can be to feel so horrible and not have the answers quick enough as to when you can start feeling normal again.

    Donna

     
    Old 02-12-2005, 03:25 PM   #10
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    Re: Lupus or what?

    Dear TinaV,

    Your story rings bells with me...! Here's a thought: have you ever seen a really good "medical" dermatologist, meaning one known for diagnosing, as opposed to mainly doing cosmetic procedures? Or a dermatopathologist, who is a dermie who does his/her own labwork?

    I ask because I went through many specialists, and many skin biopsies, before finally seeing a Manhattan rheumie, who then sent me to dermatopathologist for one last skin punch biopsy. This amazing specialist even had me get old skin samples (ugh, ugh ugh) from labs who'd done my earlier biopsies.

    In less than a month I had my Dx: subacute cutaneous LE, a "subset" of SLE. My bloodwork was pretty clean all along, except for anemia, which was the thing that frustrated getting a Dx. But the skin punches lit up like crazy under immunofluorescent testing.

    Turns out the subset I have is one that can be sero-negative about 30% of the time, and I was in that 30% minority. So the answers were clearest from the SKIN tests, after EIGHT years of rashes. Not to mention the elevated sed rate, the low-grade fever, the painful swollen joints, the chronic cystitis and GI problems, the weight loss, the fatigue, ETC.

    All of this is the long way to say that, with the right specialists, perhaps answers might be had from your skin rashes. Hope SOMETHING that resembles answers comes quickly for you! All my best wishes, from Vee

     
    Old 02-16-2005, 08:45 AM   #11
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    Re: Lupus or what?

    I have not been diagnosed with lupus although that was what the Rheumatologist thought I had. He did all the normal blood tests that they do for lupus and all were negative for it. He did put me on Methotrexate though......even before he got the blood test back. I had never been sick and didn't have a clue what Methotrexate was. I had been diagnosed by my hematologist with autoimmune hemolytic anemia and sent to the Rheum. I was on Methotrexate for 9 weeks and probably at about 6 weeks I started to experience this overwhelming fatigue. I already had fatigue with the anemia but this was much worse. I didn't even feel like holding my head up. I truly thought if I continued to take it I would die. I finally got to come off of it. But then unfortunately my blood counts dropped and I had to go to a higher dose of prednisone and back to the Rheum. who then put me on Imuran. Which is in the same family as Methotrexate but hasn't been as hard on me. I've now been on the Imuran for about 12 weeks. My blood counts are up and even though I believe it too is making me tired it's not as bad. I have read that a lot of people have great success with Methotrexate and it probably wouldn't hurt to try it. That has to be your decision. Anyway that's what happened with me. By the way.......I'm curious......in your posts you said that you had itching. I didn't know that was a symptom with lupus. I have not been diagnosed and all the blood tests for it have come back negative but here are my symptoms (even before I was on any medication) extreme fatigue, anemia, sores that will not go away in my nose, swollen glands in my neck, hair loss, pain in almost all my joints, low grade fever off and on, dry eyes, dry mouth, itching. Does any of this sound familiar to lupus symptoms? What were your symptoms when you were diagnosed? also have a high sed rate

    --------------------------------------------------------------------------------

     
    Old 02-16-2005, 11:13 AM   #12
    Kathie T.
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    Re: Lupus or what?

    Tinav,
    You seriously have to hang in there and be persistent with rheums. I've too had good experiences with my fam doc but not rheums. If your not happy with one rheum then go to another and keep going until you feel like your being taken seriously. I switched twice this year because I was having strong symptoms of autoimmune and passed off as a hypochodriact. One rheum was really out of line with me. Eventually doctors started to take me more seriously, but it takes persistance from your part. It's horrible but many with autoimmunes have traumatizing diagnosis stories. Research about auto immunes, stay informed and on this board.

    Good luck! Kathie

     
    Old 02-17-2005, 05:05 PM   #13
    tinav
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    Re: Lupus or what?

    I want to thank everyone for posting a reply. I was about done with all these doctors. After reading your replies I have decided to go to a dermatologist and have him do a biopsy. By the way my family doctor's nurse called me today and said they received a letter from the rhumatologist telling him she suggested I get a barium swallow test and see a pulmmary specialist. Now what is that all about. I asked her if she had given a reason and the nurse said nothing was mentioned in her letter.
    Tina V.

     
    Old 02-17-2005, 05:09 PM   #14
    tinav
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    Re: Lupus or what?

    but4grace,
    I was reading your post and it sounds like strojgens syndrome. I dont know if I've spelt it right but I know it causes dry eyes and mouth. Many of the symtoms are the same as lupus from what I understand but the eyes and mouth are always mentioned as being dry.
    Tina V

     
    Old 02-17-2005, 05:22 PM   #15
    tinav
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    Re: Lupus or what?

    Donte'
    I was reading on one of your other post about elevated liver enzymes. Is this due to the medication you are taking or have they always been levated? I have one liver enzyme that has been elevated for the past 7 years. Its nam,e starts with transp... anyway it is an enzyme they usually see elevated in a person who has been a heavy drinker for many years. I could count on one hand the number of alcholic beverages I drink in a year and still have fingers left over. Alcohol and me have never got along. So I was curious when I read about you having elevated liver enzymes.
    Tina V

     
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