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Thread: New Member Post Moved to this forum - Crystalcandance

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    Default New Member Post Moved to this forum - Crystalcandance

    Dear Members; This is a post from new member Crystalcandace. I moved it here so that everyone could read it and welcome her!

    in need of advice
    hi everyone my name is Candace. I have been having medical problems since my first pregnancy 3 years ago- including Toxemia/ Hellp Syndrome, premature labor, thrombocytopenia, recurrent miscarriages, placenta previa, etc. Anyways- I have a blood transfusion the last round- though I did not bleed out. The doctors still have left me to the theory that i had caught a viral and it attacked my good blood cells leaving me needing the transfusion. Anyways I am not pregnant anymore- have 2 healthy boys and not planning on anymore pregnancies due to the severity of my complications I got my tubes tied. When my OB released me he gave me a note for my practiconer and said they would want to run test. This note said: positive anitcardiolipin antibodies. They would not run the test so I gave it to my cardio. and he ran Lupus screening test (vipor venum ...etc) resulting in a Positive. When I started having the major problems I had been sick for around a month or so...having rashes across my forhead and all over my body...slightly on my cheeks. (more inflammed on my forehead though.) So after the POSTIVIE I went back to my practioner and finally they ran tests. I had High MPV, ANA Titer 1:80 neg., Positive Lupus Anticoagulant, High APTT, - I have had these rashes again and again the cheeks become brighter have a day or two but they always start wtih my forhead. I am not on heparin so the drugs have not induced these results. Anyways - my practioner has decided that I dont have Lupus but wants to diagnosis me with APS which a lot of Lupus patients have anyways (explaining my blood problems) but not the rashes not the extreme fatigue and wrists and body aches. Not that every time I am sick I am sick for long periods 2 weeks min. and I catch everything. I have written down a loooooooooong list of symptoms even dating flares? and what happened each day for a 3 week period - that dont explain just APS...what should I do? Am I over reacting - does anyone think I should be concerned- also been losing my hair slowly - its everywhere not patches but just slowly falling out- never had this before until my last preg. when my hair suddenly became brittle. I am only 24 and a mother of 2 just in need of some good advice - maybe to help me at my next appt. I have scheduled with a rheumotologist and steriods on hand for next flare in case he says. Thanks for listening sorry so long... Candace
    Look For The Good and Praise It!

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    Candance;
    Your symptoms do sound as if you could possibly have Lupus, especially with the high ANA titer and the anitcardiolipin antibodies. The problem with Lupus is that the disease mimics so many other diseases. The diagnostic process can be lengthy and frustrating (to say the least).
    You are doing the right thing by keeping track of your symptoms, educating yourself about your illness (what it might and might not be) and learning about the medications and treatments available.
    You've read the criteria necessary to get a Lupus diagnosis, so you have an idea of what needs to be done and what doctors are looking for. This will help you to make informed decisions with your doctors. You can always come to us for information, answers and support. There will always be someone here to help you when you need it! Regardless of your final diagnosis, you are always welcome here!

    Peace and Blessings
    Saysusie
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    Welcome CrystalCandace,

    As Saysusie said welcome and you are always welcome to chat. It is very frustrating; and alarming. You stated you have rashes, what do they look like? Size, shape and color? Some of us who have Lupus are sun sensative along with reacting to flourescent lights.

    I would suggest getting copies of all your lab work and making an appointment with a rheumy. Take your documentation and labs along and explain how you have been feeling. You may have to see a couple of rheumy until you find one that listens and can give you feedback. It's frustrating; but hang in there. You are not alone.

    Keep us updated and take care.

    Faith 8)

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    My rashes I get start off on my forhead- same rash- always starts with it- its red and tons of dots...and then after that I get a cheek and nose rash red slightly less red sometimes...and then ig et the same rash starting on my hips migrating up and down my body...this one looks different then the face rash though...yeah have an appt with a rhuemy on jan 3rd...wish me luck...think im going to start a journal for my symtoms on a day to day basis - i had already started documenting but that might help more...thanks for the hope ;o)

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    as

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    Hi crystalcandance,

    The rashes don't sound like a coin Lupus rash; usually raised and coin shaped, no dots. Have you tracked a food diary to see if you are allergic to foods? I found out I am allergic to lettice, yeast, and rice. I was getting a rash and itching like crazy. I didn't realize how many things have yeast in it; everything.

    I had to eliminate it all; I buy a yeast free bread ($5.00). Maybe worth checking into? A lot of Lupus patients have a lot of allergies.

    Well, it sounds like you are on the right track. I am glad you are seeing the rhuemy soon. Keep a log and take it in and talk to the rheumy about it. Stay persistent in you want a diagnosis. Hang in there. We are here if you need us, anytime.

    Take care & have faith,

    Faith

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    its not a itchy rash though...thats the only thing i break out almost like acny and its gone really fast but the same rash every time
    If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I STILL HAVE A DREAM!

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    Hi Crystaldance,

    Have you taken any cortisteriods lately? I broke out in an acne rash due to cortisteroids per the dermotologist. Though, they didn't look like acne, they were dark red and scaly. It was weird.

    I would see a dermotologist and explain that your conditions. The dermotologist might be able to make a suggestion. I am sorry that I am not any further help. ops:

    Take care,

    Faith

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    There is no medicines inducing any of these rashes- the acne like rash on my forhead is the same rash i've gotten for some time now- (it doesnt stay but 2 to 3 days- sometimes reappearing in a day or two but vanishes out of thin air ya know) and when i say acne i mean it is raised not really white heady or anything...just a bumpy red dots rash...I dont take very many medicines unless I truely have too- and being allergic to a lot I am aware when I do take one. And once again here we go have rashes on my arms and tummy and starting to get sick - muscle aches like crazy...round 99999999 here we go again...my doc told me to try and get cancellations with the rheumy asap b/c he doesnt understand whats going on with me. So I dunno...hopefully Jan 3rd comes fast...frustrated!
    If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I STILL HAVE A DREAM!

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    Quote Originally Posted by Faith
    Hi Crystaldance,

    Have you taken any cortisteriods lately? I broke out in an acne rash due to cortisteroids per the dermotologist. Though, they didn't look like acne, they were dark red and scaly. It was weird.

    I would see a dermotologist and explain that your conditions. The dermotologist might be able to make a suggestion. I am sorry that I am not any further help. ops:

    Take care,

    Faith
    Oh I took pics of my rashes for the docs to see...especially this forehead one...when you say coin shaped what do you mean? The ones I get on my body are different then my face??? Just wondering?
    If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I STILL HAVE A DREAM!

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