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  • Help I just found out I tested positive for Lupus... What's next???

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    Old 01-05-2004, 11:21 AM   #1
    lulu4jr
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    Exclamation Help I just found out I tested positive for Lupus... What's next???

    I am a 24 year female and I have had a reoccurring fever since November. The Dr I went to see at first just said I had a sinus infection and told me it would be over soon. Then December rolled around and I still had a fever. So back to the DR. They ran alot of bloodwork and New Years Day I find out I tested positive for Lupus and Rheumatoid Arthritis! They scheduled me an appt with a Rheumatologist and that's it. I didn't get any other info. My appt is tomorrow, but I have no IDEA what to expect. Can ANYONE give me some insight before I go insane from worry??? Is it something I can die from like AIDS or MS??? I don't mean to be dumb I just don't know what to expect.....
    Help
    Lulu

     
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    Old 01-05-2004, 11:44 AM   #2
    AngelicBrat
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    Re: Help I just found out I tested positive for Lupus... What's next???

    Hi Lulu!

    It sounds like your doctor is on the right track, I am glad that you are seeing a Rheumatologist tomorrow! What other symptoms do you have? This is what you need to do before your Rheumy appt tomorrow:

    Write out your current symptoms

    Write out your medical history (everything you can remember all through your life) This includes kidney infections, recurrent colds and flus, and things like that. You can include joint injuries etc if you are athletic.

    Do you have fatigue all the time? Do you have a history of organ problems (kidney, heart etc)

    Do you have a rash?

    Lupus is not going to kill you like AIDS does. Since Lupus is a very personal disease, everyone is different! You sound like things aren't going too badly. With treatment for Lupus many of us can lead a pretty much normal life! We just have to be more careful of going into "flares" where our bodies show inflammation in different places. If you make sure that you sleep lots, try and eliminate stress and take the medications that are prescribed to you then you can lead a pretty much normal life! Those of us with more extensive organ problems tend to be in worse shape. The earlier you are detected to have Lupus, the better! So please try and stay calm for your appointment tomorrow. I will pray that you will find out what is going on! Keep your chin up and please let us know how it goes Take care!!

    ~Angelic

     
    Old 01-05-2004, 12:06 PM   #3
    lulu4jr
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    Re: Help I just found out I tested positive for Lupus... What's next???

    Hi Angelic,

    Thanks for the words of encouragement. I feel like I am in a hugh tail spin of my life... I am a work-a-holic and I have a high threshhold for pain. I seem to work regardless of whether I am about on my death bed or not. That's why this kills me so much. I haven't been able to work for almost three weeks now due to the high fever I have. I can't seem to shake it no matter how much Tylenol I take.... I just had a miscarriage in October too. I thought alot of my symptoms were from it also. I don't know how to take all this. You said I should write out my other symptoms for the DR appt are any of these pertainent? I don't go to the DR. I hate them. I have to be sick as a dog before I will go.

    I am constantly sleeping I feel like I can't get enough. I thought it was Mono but I haven't tested positive for that since I was 15yrs old. I have had high protein in my urine for a while now. The Drs haven't thought anything of it. I have LOTS of UT infections too. I have had a rash on my stomache for at least 6-8 months now. Thought this whole time it was a heat rash, since I'm a cook and to EXTREMELY HOT all day at work. I have PVCs and PACs, but they are currently under control. I have ringing in the ears, dizziness, MAJOR headaches that a can't get rid of, lower and upper back pain. pain in the wrists and the feet. The list just goes on and on and on... Get my point?

    It seems as though my whole world has come crashing down in the last few months. I just recently finalized my divorce. Can we say HIGH Stress levels here??

    I don't know what to think of all this. It seems so HUGE right now. I think I'm gonna go out of my mind before it's over with. How do you cope?

    Thanks for any words of advice.
    I need as much as I can get right now.

    Lulu

     
    Old 01-05-2004, 02:42 PM   #4
    AngelicBrat
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    Re: Help I just found out I tested positive for Lupus... What's next???

    Hi Lulu,

    Have you read the information in this forum about Antiphospholipid Syndrome? Since you are positive for Lupus, I would be that your neurological problems (headaches, miscarraige) are from APS! I really hope that your Rheumy will test you for it!! There are two blood tests, the anticardiolipin test and the Lupus Anticoagulant. Please look on this board because you really sound like you have the combination of Lupus AND APS going on here!! Basically, APS is "sticky blood" putting people at risk that have it of strokes, TIA's, miscarraiges, heart clots etc Being treated will make all the difference for you if you do have it! (my bet is that you do- I am 99% sure) They can treat you with warfarin, a blood thinner since you have the history of miscarraige. PLEASE don't be scared, but tell your Rheumy that you have had a miscarraige, and that you have headaches. If this RHeumy is good they will test you. If they don't mention that they are testing you for APS, ASK THEM TO. That is so vital, because lots of them dont know much about APS and its effects. I had to travel to London England after having strokes, TIA's and eventually I have lost my vision because of inflammation and clots in my eyes. It still may come back, but I am being thinned out (my blood) in hopes that the clots will disolve. Trust me, if you do have APS and you go on blood thinners- you will feel like a new woman!! Please check this forum and read about APS before your appointment okay? Do you have circulatory problems (problems in the cold/heat). Do your hands, or feet swell up?

    It's funny that you say your a workaholic.. many of us "Lupies" are workaholics! I think that's what causes us to get sick so fast. You will need to change your lifestyle to accomidate your symptoms (trust me, I know how much that sucks!!) I hope this helps.. I don't want to scare you but help you get in the right direction We are here for you! I have been there- trust me You sound very much like me!!

    ~Luv, Angelic

     
    Old 01-05-2004, 02:45 PM   #5
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    Re: Help I just found out I tested positive for Lupus... What's next???

    P.S. The high protein in your urine could be from the Lupus causing inflammation in your kidneys. Do you have your medical chart to take with you? I would try and get it before your appointment if you can.

    You cope by finding others that are going through the same things. You are on the right track It's so good to find a place to vent, and help find information too! Some of my best friends are going through the same thing as I am! I find for me, since I am very smart with Lupus and APS that I cope by helping others. It keeps me "sharp" as a whip! Ask lots of questions.. and if this Rheumatologist brushes you off then you need another one. I had to see 10 before I was diagnosed! Some people have a really long journey to a diagnosis, and others have a short one. I hope and pray that the one you are seeing is good and that you are diagnosed and fixed soon! Take care

    ~A

     
    Old 01-05-2004, 04:01 PM   #6
    Christabelle67
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    Re: Help I just found out I tested positive for Lupus... What's next???

    Dearest Lulu Hello from Australia

    I hope you dont mind my response to you, coming from one fairly new in my diagnosis with lupus. I felt it pertinent to share with you that the myriad of feelings and jumbled thoughts you are having are anticipated in the medical field - as a normal reaction to being diagnosed with a Chronic Illness! It stinks I know, for having been hit so hard (as many of us here) myself.

    I've had ills and ails in the recent few years that numerous tests could not find answers too, and yet others did, but this revelation as such, really knocked me for 6! At first I could not understand why I felt so consumed in anxiety etc, but now that a couple of months have passed, I can see why quite clearly!

    So much was happening in my life throughout 2003 and the speed was often leaving me 'hard to catch my breath'. Rather dramatic occurrences. No sooner had one thing passed another was passing it! I really began to feel 'swamped' in it all. Emotional, mental and spiritually challenging life experiences. All of these amidst a sea of health issues that were still being pursued as to what 'is up' inside my body only aided in the lupus flare that hit me in early October.

    I was stressed to the max - physically and emotionally. Mentally I felt fine. But the physical and emotional impact took its toll. Then I was referred by my Dr to the most thorough Rheumy. He ran every test - twice over and didnt give me my results til he ran every other test to rule out other 'possibilities'. By the time he gave me my results I was pretty messed up with the 'possibilities' and continual stress going on in my life! I fell apart in a heap with concerns as I feel you are in your search to understand.

    It is frightening for some of us. There is so much to take on board that it is very easy to feel overwhelmed with 'new' information being thrown at your feet. Please take note of how you feel and what you are thinking, if you feel anxiety taking the reigns and controlling you, talk to your Dr ASAP about this.

    Remaining calm as you go along is most important. I know my strengths and weaknesses and talked to my Dr about the anxiety holding me tightly. I am now taking anti-depressants with excellent results. At first I found learning about Lupus and MCTD most overwhelming, I felt my life taken out of my hands and everything had a feeling of uncertainty about it - I detested this because Im so organised, lol. As a mother of 4 teenage sons and my beloved husband, I worried about them. Since being placed on the medication for the anxiety, I immediately gained a sense of self-control and well-being within my MIND! *yipeeee* as well as medication for the lupus.

    Being a workaholic, yes I has to agree with Angelic I think thats part and parcel! Work ourselves to the bone - it ain't good! The results, other than extreme fatigue, burn out, aching bod etc bring us here sharing. Lifestyle changes can be something we have to take heed from rather than a direct choice as such. But these lifestyle changes dont have to be so hard hitting, they can come with many 'unseen' rewards. Like learning to sloowww down and appreciate the finer things in life (not that Im saying you dont!), like exercise, walking, swimming, learning new crafts, taking personal time out to care, nurture and pamper yourself.

    Re-assessing the way in how we do things, our choices, our direction, our path, why we want certain things, how we can achieve it, and if it really is that important any more. Spending quality time with loved ones, with our fluffy babies (animals). At first it all feels ever so overwhelming and you wonder how you can take it all on board and cope and what on earth lies ahead, but I can say that that will come to pass sooner rather than later.

    SO please as important as treatment for your lupus IS, so to taking care of any anxiousness. If you feel consumed in anxiety, speak to your Dr, because once you take care of this vital aspect of self, you will feel like you are flowing again and you will know it!

    It is a good idea to work with your Dr's and Specialists now, no time to waste, and no time for avoiding such. The sooner you walk with this, the better it is for your health! Action can avoid complications or additional ills/ails coming up. You will be grateful for following appointments through. The more you learn, the more you will feel better prepared and quite capable of getting through with this new found knowledge. Ask many questions, there are no silly or dumb ones, believe you me, I pained many folks, lol with my sea of never ending questions - that I still come up with *chuckles*.

    (((((Gentle Hugs))))))
    Christel

     
    Old 01-06-2004, 03:04 AM   #7
    AnAnglesMother
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    Re: Help I just found out I tested positive for Lupus... What's next???

    Could you tell me what blood test they did to determine your Lupus? My doctor suspects I have it, but I haven't had any tests done just yes... I seem to have the same problems as you do along with the major organs being affected and the joints throughout my body... I have suffered migraines ever since I was 18 and have 2 TIAs

     
    Old 01-06-2004, 03:38 AM   #8
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    Re: Help I just found out I tested positive for Lupus... What's next???

    Lulu,
    I have many of the symptoms you do. Please take Angelic's advice and be tested for Antiphospholipid Syndrome. I have the fevers, joint pain, headaches, history of miscarriages, protein in the urine and alot more. I think it would be wise to be tested for this. I have systemic lupus and APS. Please don't panic. The more you educate yourself about these disorders, the better off you are. Please keep us posted. Shari

     
    Old 01-06-2004, 09:12 AM   #9
    AngelicBrat
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    Re: Help I just found out I tested positive for Lupus... What's next???

    Hello AnAnglesMother,

    The diagnosis of Lupus can be a tricky one. The blood tests that they use as a guide (with symptoms of course) are:

    ANA- Anti-Nuclear Antibodies

    Anti-DNA- VERY specific for Lupus

    ANCA- shows in some Lupus patients

    Rheumatoid Factor- Positive in 15-30% of Lupus patients

    Anti-Ro (SSA)- Also used for Sjogren's Syndrome

    Anti-SSB-

    ENA- extractable antibodies

    C3C4- often lower in Lupus patients

    Urine tests- can show protein which can mean kidney inflammation

    ESR- Can be elevated to indicate inflammation in Lupus (although it is pretty non-specific)

    Anti-SM antibodies-

    Immunoglobins-

    False-positive Syphillis test- In Lupus patients, some will show a false positive to this, which is odd!!

    And on top of those, some Rheumatologists will test the anticardiolipins and the Lupus anticoagulant to see if Antiphospholipid Syndrome is part of the problems with a patient.

    I think that it would be a good thing for you to be tested for APS too AnAnglesMother, because of your history of migraines and TIA's! Please read "Possible Lupus and Neurological symptoms?" Check that out, I think that you may fit into APS too! Take care and hope this helps

    ~Angelic

     
    Old 01-06-2004, 07:09 PM   #10
    AnAnglesMother
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    Re: Help I just found out I tested positive for Lupus... What's next???

    Quote:
    Originally Posted by AngelicBrat
    Hello AnAnglesMother,

    The diagnosis of Lupus can be a tricky one. The blood tests that they use as a guide (with symptoms of course) are:

    ANA- Anti-Nuclear Antibodies

    Anti-DNA- VERY specific for Lupus

    ANCA- shows in some Lupus patients

    Rheumatoid Factor- Positive in 15-30% of Lupus patients

    Anti-Ro (SSA)- Also used for Sjogren's Syndrome

    Anti-SSB-

    ENA- extractable antibodies

    C3C4- often lower in Lupus patients

    Urine tests- can show protein which can mean kidney inflammation

    ESR- Can be elevated to indicate inflammation in Lupus (although it is pretty non-specific)

    Anti-SM antibodies-

    Immunoglobins-

    False-positive Syphillis test- In Lupus patients, some will show a false positive to this, which is odd!!

    And on top of those, some Rheumatologists will test the anticardiolipins and the Lupus anticoagulant to see if Antiphospholipid Syndrome is part of the problems with a patient.

    I think that it would be a good thing for you to be tested for APS too AnAnglesMother, because of your history of migraines and TIA's! Please read "Possible Lupus and Neurological symptoms?" Check that out, I think that you may fit into APS too! Take care and hope this helps

    ~Angelic
    Thank you very much for all of the information. I wish the best to all of you suffering with this. It gets hard at times, but it's even worse when there is the unknown. This is a wonderful place to talk and get information. It's my first time here and I already have learned so much. I hope everything works out Lulu. I would like to hear more about your process as you go through all the drs and testing. Have a great day, I will keep you all in my prayers.

    AnAnglesMother

     
    Old 01-06-2004, 07:13 PM   #11
    lulu4jr
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    Re: Help I just found out I tested positive for Lupus... What's next???

    Ok Folks....

    I am so thankful for everyone worrying about me and my progress.
    I have started another Thread that lets everyone know how my appt went.

    I think I have more questions now than I did this morning. I have listed them if anyone has time to review them, it would be greating appreicated!


    Thanks and take care!

    Lulu

     
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