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I am new to this site and new to lupus...I just found out finally what I have been suffering from for a very long time - the doctor had told me on Tuesday that I have tested positive for Lupus 7809 to be extact but he wanted to retest me to make sure it wasn't a false positive. I am tired all the time, dizzy, can't keep my balance and I stutter which I have never done before. the new thing that is forming now is I feel like I am getting arthritis (which runs in my family Rheumitoid and Fibryoid Myalsia) I notice that I get very tired by just doing the simpliest things now which never bothered me before and that bothers me very much!! but before this I thought I was going absoultely crazy not know what or if I had - the uncertaintly dosen't sit well with me.
If anyone wants to just talk I can really use a friend with Lupus who is going through what I am going through right now! Thank:):(
 

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Ive not had a very good summer. The summer before I would of never thought I was sick. Ive not felt well it seems for along time. Lupus is unpredictable and different in everyone. The overwhelming fatigue, and pain never lets me forget I have Lupus. I hope you feel better soon!!! :)
 

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Thought I was going Crazy

My regular Dr. hasn't done anything for me as of yet...the only meds I am on is Topomax for my headaches(which dosen't work) and Meclizine for the dizziness which makes me even more tired. So I don't know what I am doing as of yet!? Just really confused :rolleyes:
 

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I moved your posts to start a new thread for you so your reply wouldn't get lost in another thread (and because your post is more of an introduction than a reply to her post).

If your regular GP is thinking you have lupus after running some tests, and no medication has been prescribed yet, then I think your next best bet is to get into see a rheumatologist. Even before the second testing to be sure your initial blood test was not a false positive. The rheumatologist is the expert in these autoimmune diseases, and will know the best treatments and be able to identify if you have one.

Good luck to you, hope you get some help for your symptoms soon.
 

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Hi there

Welcome to the Forum. Im wondering about the blood test you mentioned. It sounds to me like it may have been the Lupus Anti-Coagulant test which isnt a test for Lupus (strange though it might seem!) but is in fact a test for another condition called APS (Anti Phospholipid Syndrome) also known as Hughes Syndrome. The test is usually taken a second time about six weeks apart to confirm a positive. Here is a link about the condition:

http://www.hughes-syndrome.org/

APS can be present as a single, primary condition or it can be a secondary condition to SLE. Some of the symptoms are headaches and giddiness (like feeling drunk), both of which you mentioned you have. Have a look at the link and see if it rings any bells.

When you go back to the doctor ask him to explain the test and see if its this one that tested positive.

We will help you as best we can to interpret the tests but its important that you ask some questions at your next appointment. Normally to get an official diagnosis of APS one has to have had a blood clotting event as well so if there is any history of this with you its important that you let the doctor know.

In the meantime the best advice I can give you is to hang in there. These diseases are very complicated and can take a lot of detective work to find out exactly whats going on. We will help as much as we can.

Take good care for now
Joan:rose:
 

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Be positive

Hi there,

I just registered this Lupus forum since yesterday. Just would like to let u know that when starts everything seems to be grey and understand it would be very hard for you right now. Im the SLE patient had the kidney disorder tested grade 4 10 yrs ago. I went through the same feeling like u...however there's a hope always ya...just to share with u that I didn't take medicine (steroids ) for almost 7 yrs, and Im getting better till now ( of course it need approval and consultation from your doctor)..I will get my DNA blood test next week. Hopefully its negative again :))

So be positive as it would help you a lot !:p
 

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confused???

Good Morning Everyone!

I have a few questions - I was told by my doctor that I had tested positive with Lupus and I had to be tested again to be sure it wasn't a false positive so yesterday I get my results and the Anachoice screen tested positive as it has the pass three time and the DNA ABS(27, 30 & 30) keeps getting higher each time I go back. We'll he leaves me a message that he wants me to see a Rheumatologist. I am ok to see another Doctor but I am concerned at this point I don't feel too good and I feel like I am not getting any better and my doctor isn't too concerned. He was also saying something about it being cardiovascular?? That concerns me even more because heart problems run in my family alot. What does this all mean? Do I have Lupus or don't I?
 

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Probably you do given those test results assuming both ANA and dsDNA are positive according to your lab - but the rheumatologist is almost always called in to treat lupus - and is the person best able to diagnose it officially. We don't know your medical history and all your signs and symptoms... so we can't really tell you the answer.

So do your best to get in to that doctor=rheumatologist quickly, and in the meantime rest as much as you can. Has your GP not given you some pain relief options? You can call and ask about some options for that, even an NSAID like Advil or Aleve in prescription strength dosing can help.

Good luck and thanks for the update. I hope you get some answers and helpful treatment soon.
 

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Confused

The only meds the doctor has given to me is meclizine for the dizziness and that makes me even more tired then what I am :worried:

I am just concerenced about the words he used of cardiovascular in his message on Friday - my husband and I both heard the message and were both alitte concerened by it - that's all

Just a lot of questions for the gp or the rheh - which everyone is going to listen:eek:
 

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Hi TwoboyMommy,

First let me say welcome to the Forum. This is a place where you can get a lot of support and answers to your questions. The Moderator's are very knowledgeable and helpful. Second, I have been newly diagnosed with Lupus myself, and can relate to your fears, concerns, and trepidation. It can all be very overwhelming, but a bit of a sigh of relief after a long road of undiagnosed problems. Remember to breath.....try not to panic, and read as much information as possible on Lupus. There are some very good books about Lupus (SLE) on the market, which you can find on Amazon.com. or Amazon.co.uk, depending on where you are located. The books I can recommend are as follows: Coping with Lupus, Revised and Updated, by Robert H. Phillips, Ph.D.; Lupus Q&A, Everything You Need To Know, by Robert G. Lahita, M.D., Ph.D., and Robert H. Phillips, Ph.D.; The Lupus Book, Third Edition, A Guide for Patients and Their Families, by Daniel J. Wallace, M.D., and the current book I am reading is New Hope for People With Lupus, by Theresa Foy DiGeronimo, all of which I ordered from Amazon.co.uk, as I am currently living on this side of the pond. I have found some very useful and very hopeful information in these books, which helped me to gain some insight and understanding as to what I am now facing in my life. I hope this bit of information is helpful....and remember you are not alone.... please feel free to email me directly if you just want to talk, or need a shoulder to lean on... I'm not a doctor, I don't profess to have all the answers, as I'm new to this disease myself.

I wish you all the very best.....and just remember to breath.

Kindest Regards,
AndreaK ;o.}}
 

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Hi and welcome to The Lupus Site :welcome:


don't forget that this site has a book store which enables us to recoup a percentage from Amazon when books are ordered via the site. It all helps to keep the place running :)

http://www.uklupus.co.uk/lupusbooks.html
 

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Welcome TwoBoyMommy,

You have come to a great place for support from caring and knowledgeable people. I too am newly diagnosed with Lupus.

I always say Knowledge is Power so read all you can and learn about your disease. It really does help when we are educated because we understand more. I am reading everyday and have found the more I read the calmer I get.

Maia is right, a Rheumatologist is your best bet and that is who you should treat with for Lupus. Once you get on the correct meds you will probably start to feel much better.

I am sorry about your diagnosis but sure glad you found this site. I hope to get to know you better. Good luck and let us know how you make out.:wink2:
 

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Hi! I just wanted to add my welcome and tell you, as a newly diagnosed 'lupie" myself, I really do understand your concerns and questions. I think we all have hundreds of them. I find the moderators and veterans very knowledgable and helpful. Of course your main source of information should be your doctor, but there are some things only people with lupus can tell you. Thank goodness for this forum. It will be a great means of support for you.
 
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