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Thread: Need YOUR perspective on my diagnosis...

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    Default Need YOUR perspective on my diagnosis...

    Hello all,
    I am brand new to this forum and just got diagnosed with Lupus last week.

    Some background info: I have hypothyroidism--on meds and under control--but didn't show Antithyroid antibodies (TPOAb). Had my 1st pregnancy followed by miscarriage in March (5 months ago).

    Six weeks ago, I was perfectly normal and healthy. Then, I woke up one morning, with the left side of my neck sore. I thought I had slept wrong. Next morning, I woke up with both sides sore. The next day, my hands and feet were sore, like I had over-exercised them--gone rock climbing or something. It wasn't really bad pain, just soreness that went away around 10-11 am.

    Over the next 5 weeks, the pain became very, VERY intense in my hands and feet in the a.m. and spread to other areas: ankles, shoulders and knees. It continued throughout the day. Sometimes it was my joint affected (my shoulder felt like it needed to be popped) sometimes it was the muscles and tendons affected (the BACKs of my knees hurt; the sides of my hands, trailing up from my wrist up my arm, like Carpal Tunnel).

    They ran blood tests. Here are the ones that, as far as I know, are relevant: (Sorry for the reading difficulty--when I typed it out, I put plenty of space between the columns of My Results and Reference Ranges, but when I posted it, it took it away--so I highlighted the Reference Ranges, to try to make it easier to read...)
    Test: My Results: Reference Range:
    WBC 5.33 3.5-10.8
    RBC CNT 4.43 4.18-5.22
    ESR 9 0-20
    RF 17.1 0-13.9 "slightly elevated" in the words of my rheumatologist
    C3 104 90-180
    C4 33 9-36
    CH50 46 22-60
    RNP antibodies 3.3 0.0-0.9
    Smith antibodies <0.2 0.0-0.9
    Parvovirus 19, IgG 5.2 <0.9 Neg, >1.1 Positive
    Parvovirus 19, IgM 0.3 <0.9 Neg, >1.1
    CCP Antibodies 1 <20 Negative
    Anti-dsDNA 6 <5 Neg., Equivocal 5-9, >9 positive
    ANA, IFA 1:1280 Speckled Pattern
    Negative Lyme Test

    Based on the above, my rheumatologist told me I have "some sort of autoimmune disease, probably a mild form of lupus." He started me on 20 mg/d prednisone for 2 weeks to control pain, and will put me on Plaquinil at the end of those two weeks.

    Well, the prednisone did GREAT for all of one day--the 2nd day of taking it. I'm on day 6 of taking it; since day 2, which was AMAZING, my hands and feet/shoulders have slowly begun to get more and more painful in the mornings. I'm back to taking my prescription anti-inflammatory (which he said I could back off of), and my pain meds (tramadol) to TRY to get completely pain-free (and I'm not).

    I am just wondering if I really have lupus. I am not sun-sensitive...I don't have rashes. The joint pain I described above is my only really bad symptom. I do bruise easily, but I've never had the rash, I don't have protein in my urine, kidneys are working fine. I do have brain fog...but it could easily be my thyroid issues.

    Can anyone shed any light on this? Is there, by any stretch of the imagination, the possibility that I just picked up some horrid virus????

    Thanks for reading all this...I know it was a long post. I just have so many doubts and questions.
    Last edited by MrsR3ams; 08-07-2012 at 06:59 AM.

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    Hi and welcome to WHL.
    Since your diagnosis was just last week, I would try and trust the Rheumatologist.
    How much prednisone are you taking?
    I was diagnosed about 5 years ago and only had a little rash here or there, but never the butterfly rash. I am sun- sensitive, but not through the skin, I get nauseated, my joint pain increases, my brain fog gets worse and I get very fatigued.
    Try and hang in there and let the rheumy figure this out.
    The diagnosis is very scary and stressful in the beginning.
    You are in good company, we will be here for you.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    They did a urinalysis on you then? I'm not real familiar with all the blood tests myself, so someone else would have to speak to that aspect of it. There is nothing wrong with consulting with another doctor though. You could take the results of the blood work you had done earlier with you, and maybe the 2nd doctor would order more, and compare the two sets. Labs themselves can get different results from each other on tests. Likewise, doctors can come to different conclusions from each other, using the same data... That aside though, just because you don't appear to be reacting to the sun on the skin at this time doesn't mean that you're not reacting. You need to protect yourself from the sun as best you can. Even just the elevated RA causes issues with that. Then there's the meds, and they wil impact your reaction to the sun. Somewhere here, someone has posted the 11 "symptoms", and the "standard" is for a person to have 4 of them. I've had way more than that for a good many years, and they didn't say I had lupus until a few weeks ago (different doctor, different diagnosis). Also, not to scare you about it or anything, but I haven't been "pain-free" in years. Part of the territory. "Pain management" is closer to the mark.

    btw, between avoiding the sun, and your hypothyroidism (autoimmune, hashimoto's??) might make it to where you'd need some vitamin D supplementation, so be sure and talk with your docs about that. You don't want to do that on your own, since you can get too much vitamin D, and that isn't good for you. They can do a blood test for it when they test your thyroid function.
    Last edited by jmail; 08-07-2012 at 01:28 PM. Reason: Ooops!...
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Welcome to WHL!
    You have received some good advice. You should read the stickys at the beginning of each forum. That's where you will find those 11 symptoms that Jmail was referring to. You will also find a list of over 60 autoimmune diseases. Many of us have an overlap of AI issues - mine is Lupus, Sjogrens, RA and Psoriatic Arthritis. Since you have that RA factor showing up, you could have a mixture, too. My rheumy said that I was "mildly positive" to several things, but when you consider them cumulatively, I was obviously in a lot of pain.
    Luckily, most of the AI issues are treated with the same meds, so once the docs get that figured out, you can find the meds that will work for you.
    Hugs,
    Marla

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    Hi and welcome to the group. I have to agree that you need to listen to your doctor. None of us are medical professionals and we can't help you overturn your doctors advice. What I can tell you is that no two Lupus patients are alike. Many people are not sun sensitive an d many don't have rashes. Lupus attacks us all differently which is why it is often so hard to diagnose. I would actually say to consider yourself lucky that it was found so quickly so that meds could be started before it became too severe. With proper meds many people live a long and basically normal life.

    Pmce again. Welcome to our WHL FAMILY. Weare glad you are here
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    hi and welcome,

    unfortubnatelly there is no test to confirm that you have most of the auto immune disorders.
    the diagnosis is a process of eliminating other problems.

    luckily, most of the disorders respond well to the same types of medication.
    hence your prednisone, and plaquenil.

    please let the doctor continue with the testing.
    some of us have had to wait years for the doctor to finalise there testing,and diagnose us.
    others are diagnosed in 1 or 2 visits.

    lupus effects everyone differently. so please be patient.

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    Everyone has gave some good advise already and I have learned so much by reading older threads on here and trying to ask questions. I can't help with the blood testing results as it is still very confusing to me. The only advise I can give is try not to get to frustrated with your Dr's. Just give them time and they will figure it out if you do not like the one you have and do not feel they are doing enough find a new Dr. but please don't stop seeing your original till you are set up with a new one. I know for a fact that if I hadn't been so stubborn and quit seeing mine I would not be in my current situation. (A bad flare attacking a artery)
    I hope you find answers.

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