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Thread: Newbie - Advice Please!

  1. #1
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    Default Newbie - Advice Please!

    Hi y'all... so just looking for some advice/insight/guidance/suggestions/support. I am 24 and recently told by two internal medicine doctors that I have lupus based on my ANA test and the following criteria:

    I have had pleurisy multiple times in my life
    I am anemic
    Discoid rash spots
    Constant redness of the bridge of my nose/cheeks (malar rash)
    I get a what looks like a "break out" on my back when I am in the sun
    My joints ache/swell (my knuckles, knees and ankles swell on a regular basis - mostly bothering me right before I go to sleep each night)

    I recently had to resign from my global commercial real estate firm job that I loved because my manager was telling my ex boyfriend (his best friend) and some people that work in a competitor's office the details of my being out of the office/medical appointments. My COO just expected me to put up with it and continue working for this guy (even after he wrote me up for using my PTO without asking in advance)... but coming to work was hard enough due to how terrible I feel all the time and I just decided life is too short to allow horrible situations to go on (even if I did love my job very much).

    I haven't started any medicines yet - I almost feel like the doctors don't know what to do next. When I went for my second opinion the internist literally said "there is no way you have lupus, that's bullcrap"... only to later wind up agreeing that he does think I have it. All of my other blood tests besides the ANA and anemia show that I am perfectly healthy.

    Neither of the two doctors have decided what medicine they think is best for me - but I just started a new job and each day is getting a little harder. Are there any natural vitamins/minerals you all find very helpful? Diet suggestions? I am not overweight, I love exercising and just can't find the energy to do it most days anymore.

    Thanks - sorry it was long! I welcome any comments/concerns/suggestions/advice!

    SBW

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    Welcome to the site! You seem to be in that very difficult stage lupus limbo that so many go through. Do you have it do you not what the doctors think what they don't.. It's never fun for anyone and can be very stressful. If they think you have it they should have prescribed plaquinel-which is usually the first line of treatment for many concerning lupus. Have they sent you to a rheumtologist that will better understand your symptoms and what's going on with you? Sometimes it does take awhile to get diagnosed at first. Other time it depends on who your doctor is, how long they've been dealing with lupus patient, whether or not they think your crazy (which I'm pretty sure my doctor does half the time) it amaze me sometimes how little some doctors know of things that they are supposedly "schooled" in. I think the first thing needing to be done is to see a doctor who specialize in lupus-usually ends up being a rheumatologist. Then go from there and see what happens with it. if you do have lupus and they diagnose you then they will likely start you on plaquinel and if that doesn't help after awhile they may try prednosion as well to help control the symptoms your experiencing. I am still new to all this lupus stuff but I am learning. I'm 23 and just Dx in march of this year. I hope you get some answer soon so you'll start feeling better, whether it be you have lupus or not. It is a lifestyle change but with meds it can be controlled.
    I'm sure others will be along to give advice and wisdom that are more suited then I am, so I'm sure they will be very helpful. I hope things start to get better for you. Again welcome to the site and look around the other posts and get some info that might help you out!

    Tori

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    hi sbw,
    i would suggest geing a doctor, probably one of the inters, to write a referal for a rhuematologist.
    take a copy of your bloodwork, and anything else you have to this appointment.

    there is some very good threads to read here.

    read the one that discusses the criteria for lupus diagnosis.

    there are some vitamins and minerals that "help", but only if you are deficient.
    overdosing on vitamins and minerals can be bad for you.

    others will be along with more information.

    again welcome, please read what others have experienced, and get your referal.

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    Hi SBW, welcome to our family! So many of us had disbelieving docs, but in time our bodies scream Lupus. Supplements help if you have an area that is in need, but I have to tell you, Plaquinil ready was the ticket for me Wun first diagnosed. I am presently waiting on a prescription for q necessary hormone, but I called as the squeaky wheel gets the grease. Sleep helps me when all else fails. I hope you feel better soon.

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    Hi SBW,

    A large welcome to WHL and we're a close family of helping one another but we're not doctor's but all suffer Lupus symptoms.

    You need to get refered to a Dermo specialist besides a Rheumo, Dermo's run more bloods to find the underlining of what's causing the skin to flare regarding Lupus, as i've had all your symptoms and have heredity psoriasis and also discoid Lupus and refering a Rheumo more bloods will be done and x-rays.
    Refering your skin you need steriod based creams which will help such alot but you have to have a break in between as they're an aging cream.

    Refering the swelling i get all this and alot of other member's and one thing you can't afford to do is get stressed or depressed as those are the main issues that lupus thrieves on and you'll feel the symptoms alot more...i state this because i'm a manic depressive through Lupus and i was diagnosed 3yrs ago with it and i'm also an anaemic like yourself and i'm on a folic acid tablet daily and a B12 Jab every 3mths for life, so yours needs to be sorted also.

    Being refered to a Rheumo specialist you need to know what's involved with your lupus regarding an A1 Disease or Autoimmune disease to see which is linked to your symptoms.

    Terry xxx

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    Welcome to this site. I too am new here and I am fortunate enough to have found a rheumatologist who listens to me and knows how to treat me. I am so sorry
    that this is affecting your work. I have been on Plaquenil since May and although my ANA number has been positive once and negative once my doctor recognizes that my symptoms are definitely part of the diagnosis. Even my GP commented this week that he is thrilled that I am being treated even though one doctor laughed in my face and told me there was no way I had Lupus.

    Keep us posted on you are doing.
    Melanie

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    Good Morning and welcome to WHL! I am so sorry about what you are experiencing but I am glad you were able to find us. I would suggest that you find a good rhuematologist. They will test your bloodwork for other signs of Lupus (although there is no one test that makes that decision) and start you on meds. There is no natural cure or diet that will cure lupus. Many people claim to have the cure or natural way to make it go away but all that leads to is allowing the disease to progress. Once you get to the Rhuemy they will most likely start you on Plaquenil and a low dose steroid to try and get things under control. Plaquenil is the first like defense for Lupus however it takes about 4 or 5 months to really start working so it is important that you get started as soon as possible. If you can self refer then I suggest calling the the specialist today and, if not, call the doctor and get a referal ASAP.

    Once again, welcome to WHL and I look forward to getting to know you

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    Quote Originally Posted by Peridot20_Gem View Post
    Hi SBW,

    A large welcome to WHL and we're a close family of helping one another but we're not doctor's but all suffer Lupus symptoms.

    You need to get refered to a Dermo specialist besides a Rheumo, Dermo's run more bloods to find the underlining of what's causing the skin to flare regarding Lupus, as i've had all your symptoms and have heredity psoriasis and also discoid Lupus and refering a Rheumo more bloods will be done and x-rays.
    Refering your skin you need steriod based creams which will help such alot but you have to have a break in between as they're an aging cream.

    Refering the swelling i get all this and alot of other member's and one thing you can't afford to do is get stressed or depressed as those are the main issues that lupus thrieves on and you'll feel the symptoms alot more...i state this because i'm a manic depressive through Lupus and i was diagnosed 3yrs ago with it and i'm also an anaemic like yourself and i'm on a folic acid tablet daily and a B12 Jab every 3mths for life, so yours needs to be sorted also.

    Being refered to a Rheumo specialist you need to know what's involved with your lupus regarding an A1 Disease or Autoimmune disease to see which is linked to your symptoms.

    Terry xxx
    Terry,

    We need to be careful when giving advice to new members and the newly diagnosed.

    In the red text I've highlighted above, you are stating these things as if they are facts.

    You, and indeed none of us are qualified to speak as an authority with such specitivity on such things.

    In the future, please try to word your posts in a way that makes it obvious that what you are saying is a helpful suggestion rather than a fact to be acted upon.

    Thank you,

    Rob

    Moderator

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    Hello and welcome! I too am new to this site, but I can tell you I am glad I found it, all the people on here are great! You will find out that most people don't understand, so it's nice to have a place like this where they completely understand, no question is too stupid, and you will get great support, good luck and I hope all is well. -Gary

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