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Thread: Hello, just diagnosed with SLE and scared.....

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    Default Hello, just diagnosed with SLE and scared.....

    Hello, I was just recently diagnosed with SLE a couple days ago, after many Doctors, countless bloodtests, and even a surgery. The blood test had a titer of 1:320, homogeneous pattern with particular antibodies detected. I don't have much joint pain at all, sometimes my hands hurt, or my knee, or feet, slightly. No swelling, no rashes. My main symptom is muscle pain/twitching, chest pains (all across the chest). I've been doing my own research and I am SO scared. I'm worried about my heart, lungs, & kidneys, and shouldn't I get these checked? Doc didnt say so, but still? He prescribed me plaquenil, and I hate taking conventional meds. Is there any natural remedies? I know nothing about this disease....I'm so scared. Any suggestions??

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    Welcome to WHL! Don't be scared, you are already through the worst part! As you seem to know, getting diagnosed is so difficult for us. How long was it from your first symptoms until your diagnosis? I went through just 3 years of not knowing why my body was malfunctioning and I don't find that to be near as long as some people on this site. It's easy to get scared if you are reading about Lupus online. One thing that should make you feel better is that everyone is different and the online descriptions of Lupus describe pretty much every symptom possible with this disease. Those of us who suffer with it don't go through each and every symptom. Everyone goes through their own set of Lupus issues, or some even keep it under control with few problems. I would go ahead and get checked out if I were you--Mostly and if only to ease your mind. The WORST thing for Lupus is stress, so being worried and upset about it will only make matters so much worse. Just know that you have friends here and we understand what you are going through. We are here if you need to vent or ask a question. Talking to people who understand is so refreshing and truly a blessing.

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    HI again Mom of 4! Welcome to WHL. Please take a look around the forums I think you will find the answers to many of your questions. Also, feel free to post any questions that you want and we will be glad to pipe in! Please take a deep breath. This isn't a death sentence and as Blue said, stress makes things worse so try to relax. We are here for you now and I promise that makes it easier
    Mari

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    welcome mom of 4 we have already chatted on chat line but this is my official welcome we are all here for you hugs kim l

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    Hi and welcome! It is true . . . You have made it thru the hard part! No need to be scared. I am sure if the doctors saw something in your bloodwork and other tests, as far as your organs go, they would have alerted you to any issues. I do agree, however, if it would help settle your mind then go and have things checked out. I had some concerns checked out when I was first diagnosed and it did help to put my wandering mind at ease! We are always here for you also! You will find nothing but wonderful people here who are also full of knowledge and understanding. God bless you!
    Last edited by froggal; 12-10-2010 at 01:29 AM. Reason: spelling
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    Quote Originally Posted by MomOfFour View Post
    Hello, I was just recently diagnosed with SLE a couple days ago, after many Doctors, countless bloodtests, and even a surgery. The blood test had a titer of 1:320, homogeneous pattern with particular antibodies detected. I don't have much joint pain at all, sometimes my hands hurt, or my knee, or feet, slightly. No swelling, no rashes. My main symptom is muscle pain/twitching, chest pains (all across the chest). I've been doing my own research and I am SO scared. I'm worried about my heart, lungs, & kidneys, and shouldn't I get these checked? Doc didnt say so, but still? He prescribed me plaquenil, and I hate taking conventional meds. Is there any natural remedies? I know nothing about this disease....I'm so scared. Any suggestions??
    Hi MomOfFour,

    Doing research is a good thing, but it can also be a bit overwhelming for a person who is recently diagnosed. When I was first diagnosed with SLE I was scared too, I figured it was game over. However, as I adjusted to the news and learned to accept it, I found that fear gave way to determination, and resolve.

    You fear is a normal thing, but it will not last. As time goes on, and you learn to cope, the monster will lose most of it's teeth. Although Lupus is a serious disease, it's by no means a death sentence. We have people here who have successfully lived with Lupus for many, many years. I've lived with it for nearly seven years now, and my mother, who also has SLE, has lived with it for over 20 years, and is still going strong at the age of 73.

    In regards to you question about natural meds or treatments, I would advise you to steer clear of these so called "remedies". They tend to be ineffective, expensive, and can make things worse by giving the user a false sense of wellness, while the Lupus gains a foothold and attacks the body, sometimes with irreversible damage.

    As for your other question, it looks like others have given an answer, so I won't repeat it. Have hope, you can get through this. There's always someone here to talk to, night or day, so don't be afraid to jump right in to the conversation.

    Welcome to WHL,

    Rob

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    Hello, I had kidney problems when I was first diagnosed, but with medication it got better. We hardly hear of people having serious kidney and other serious organ problems as Lupus is usually diagnosed before anything serious happens.

    YOu asked about natural remedies to help you. My advice would be to live a healthy lifestyle. Work hard to reduce and cope with stress. And take the Plaquenil. This is the same advice diabetics are given. But they are told to take their insulin otherwise they WILL get sick. It is generally the same with Lupus. YOu NEED TO TAKE YOUR MEDICATION otherwise it is highly likely that you will get sick, or even sicker. Now then you are putting yourself in the high risk factor of having organ involvement. Try not to get too scared about Lupus because by the sounds of it has not developed into serious organ involvement.
    Diagnosed with Lupus - 22 June, 2010

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    LOL As Rob said and as you found out last night some of us don't sleep well so we someone could be around almost any time day or night. Add to that we have a large (and wonderful) group of Aussies whose day is our night and someone will be around for you almost any time you need us
    Mari

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    Hello momoffour,
    Welcome to the WHL, try not to be frightened as like other member's have said your over the worst and stress plus worry does make it worse and don't i know it but besides that like Mari said whatever time you want to post or chat to relieve yourself there's always member's on line. Try and just take it in your stride if you can and keep your system carm.

    Terri xxx

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    Bumping to the top for tanyaw to read
    Diagnosed with Lupus - 22 June, 2010

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