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Thread: New Member Post Moved to this forum - Crystalcandance

  1. #11
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    Hi Crystalcandace,

    When I say coin shaped, I mean they are round like a penney and slightley raised. I have never had dots; though everyone is different. Have you had it biopsied by a dermotologist? I have been through rounds of biopsies through internist; the best suggestion is to call around to dermotologists to see if they specialize in Lupus or treat related skin issues. Maybe your rhuemy can make a suggestion?

    I would want to rule out Lupus, see Newly Diagnosed and the subsection Lupus criteria. One of the labs usually ran is a Sed rate. You can also check out webmd and type in Lupus labs and it will list them.

    I broke out in acne, not like your typical pimples, dark red, scaly, dermotologist suggested special wash and it finally calmed down. Still have red scars from it; more annoying than anything.

    I don't know if I have helped; but we are all here. You are not alone. if you have any more questions don't hesitate to ask.

    Take care,

    Faith

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    yeah i have checked into many of these things reading for months b/c i have been being tested and sent from doctor to doctor for months. We are in the military at a remote base really so not a lot of sources leaving in 2 months so I am ok with leaving the diagnosis at APS for now. I have read the criteria on that other page...I actually wrote on that originally. I have all these symtoms some all the time some from time to time: Butterfly rash, rashes, nose ulcers, arthrititis - specially wrists, muscle spasms, hematolgoical disorder, postive anticardiolipins, thrombocytopenia, anemia, hair loss, neg. ANA 1:80 titer, reoccuring toxemia and hellp syndrome in pregnancy...yeah i have the appt with rhuemy will prob get them biopsied then...hopefully they listen
    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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    I would want to rule out Lupus, see Newly Diagnosed and the subsection Lupus criteria. One of the labs usually ran is a Sed rate. You can also check out webmd and type in Lupus labs and it will list them.


    I am trying the webmd thing- tried it before and typed in Lupus Labs and its not working where do i type that exactly...
    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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    ok so i found some of them...lupus tests...just looked up SED rate test which has not been done on me...ok so this is what it says

    "When inflammation is present in the body, certain proteins cause red blood cells to stick together and fall more quickly than normal to the bottom of the tube. These proteins are produced by the liver and the immune system under many abnormal conditions, such as an infection, an autoimmune disease, or cancer."

    So this really irks me - I have sticky blood platelets and well now that explains maybe why the doc that did some of the tests didnt see inflamatoin??? yeah?? Thanks for that tip writing that down for the rheumy..prob def. want it ran ;o) THANKS A TON
    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 crystalcandance,

    I am glad you found some of the tests. A Sed Rate (ESR) and C-Reactive Protein (CRP) definately need to be run!!! You are very welcome for the tip.
    Also the following:
    Anti-SS-A (also called Ro).
    Anti-SS-B (also called La).
    Anti-dsDNA (antibodies to DNA).
    Anti-RNP.
    Anti-Smith (Sm).

    Hang in there and continue to fight for a rhuemy you are comfortable with and that seems knowledgable. You had mentioned you are on a military base; hmm. I have read that many military stationed in Iraq and Afghanistan came down with Lupus. Check around and see if you can find someone knowledge within the military to see.

    Good luck & happy holidays.

    Faith 8)

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    yeah im really irked now...my cardiologist ran tests for a lupus like inhibitor and he would have ran more tests if he had not moved offices....so i had ot take it to base. And well he didnt run any of these tests its like he didnt want to or something...It was not my choice in the beginning for a doctor to give me a note and say they will want to run tests for Lupus. Igh igh igh oh well...yeah i heard this rheumy i'm fixing to go see is really good so kinda excited. Writing these tests down so we wont forget they haven't been ran...kinda ironic though- cuz for sometime i've always been told that they need a certain color test tube to run my labs b/c i have sticky cells...lol and that means inflammation which my doc says i dont have - lol...Yeah HAPPY HOLIDAYS - All I have is one stocking stuffer to get and Santa's done this year no food shopping no christmas stockings or nuffin whew! So glad I got started early this year. Well nice talking to ya! THANKS A TON
    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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    Hey guys! Just wanted to give you all an update- saw the rheumy last Thursday...and she immediately ran all the tests I had already done over PLUS all the others that had not been done ESR and C Reactive and all the others listed plus more. I'm very pleased with my visit. I dont see her for 3 more weeks though so she can get the tests back. She did prescribe me prednisone though- I told her I really dont want steriods yet b/c of the side effects- mainly weight issue- still trying to lose baby weight. So she prescribed it 5 mg for 5 days - 1 a day thats it. Says the side effects will probablly less than the other way i have it 6-5-4-3-2-1 or whatever doses it is like that. I do wonder if anyone has had hair loss and any advice...my hair had been falling out slowly - finding it all over the house- and had become very brittle over the last year...in the past 3 weeks i and my husband have noticed its starting to fall out in clumps now...any advice? something to do...??? THANKS to everyone for all the other advice before! You guys are grrrrrate! :lol:
    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:
    Almost all of us have experienced hair loss with Lupus. Either due to the disease itself or due to some of the medications we take for the disease. In almost every case, our hair has grown back.
    You can click on "search" above; type in "Hair Loss" and all articles in these forums dealing with that subject will come up. After reading what other members have experienced, what they've suggested and some of their stories, let me know if you have more questions and I will be happy to answer them for you!
    You Are Not Alone!!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

  9. #19
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    Hi Crystalcandace,

    Glad to hear you have a new rhuemy; sounds great. Falling out hair; mmmmm it's typical of Lupus. I lose mine all the time due to Lupus.
    I have heard that Biotin is really good for you 2,000.

    I recently started a new shampoo called Nioxin which is supposed to clear out the meds on your scalp; my hair loss has slowed down drastically and I have had the shampoo a week. Honestly, I didn't think it would work!! I am not finding hair balls on the floor and sweeping every two days. lol.

    Something to think about prior to your diagnosis. If you haven't already thought of it; go on the internet and purchase a life insurance policy and hopefully you will never use it. If you are indeed diagnosed with Lupus; after the diagnosis you will not be able to obtain life insurance.

    The same goes with medical unless you work full time for a company. If I had to do it all over again, I would have purchased an individual policy on my own and paid for the premium every month. Just some kind words of advice; I am not trying to frighten you. If you don't have Lupus; nothing to worry about and you are covered for the future either way.

    I hope this helps and keep us posted. Glad to hear about the rhuemy.

    Take care,

    Faith 8)

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    yeah oh my what a good idea...well i had told my husband about this already- the insurance i didnt think about life insurance...as i said though he is in the military i have medical insurance so long as he is in or he retires 20 years at least...and life insurance i'm pretty sure i have that already as long as he stays in...but thanks for the advice...def. gonna try that hair stuff cuz its gotten significantly worse in the past couple weeks...i will talk to my hubby about all this thanks your a smart gal! Good idea to pull it out a second one - incase we get out of the military...which we want to eventually end up near family. thanks a ton!
    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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