So my results came back negative for everything except having a lot of inflammation. Theyre not sure whats wrong with me. Has anyone else expierenced this. Does something normally come back positive? The doc said it might be fibromyalgia, but they didnt really seem sure about anything!
It has been my experience that Lupus is a very tricky illness to dx, and it can take quite a while to dx as well. When I was in the hosp the last time (I'm a frequent flyer) my bloodwork came back as though I was in remission, but I sure didn't feel like it. However, another blood test they did came back positive for RA...go figure huh? I guess it's never out of line to get a second opinion.....if you deem it appropriate. My Rheumy is wonderful and it took forever for him to dx me, but I feel confident in his work. I assume you are seeing a Rheumatologist?(sp?) I wish you luck...and don't give up...these stupid autoimmune things are tricky....
WebMD has a good article on the tests for diagnosing lupus, which I've included in the link below. Hope it helps.
pax, pj
INFORMATION FROM WEBMD
Lupus Lab Tests and Results: Diagnosis and Evaluation of Lupus
http://lupus.webmd.com/guide/laboratory-tests-used-diagnose-evaluate-sle
To view, click on the address above or copy and paste it into your Web browser. _______________________________________________________________________________________________________
great article
pjarden said:
WebMD has a good article on the tests for diagnosing lupus, which I've included in the link below. Hope it helps.
pax, pj
INFORMATION FROM WEBMD
Lupus Lab Tests and Results: Diagnosis and Evaluation of Lupus
http://lupus.webmd.com/guide/laboratory-tests-used-diagnose-evaluate-sle
To view, click on the address above or copy and paste it into your Web browser. _______________________________________________________________________________________________________
Autoimmunes are difficult to diagnose. Feel blessed that your test results came back negative, I would trade places in a heart beat. Just know the test that detects Lupus is called the ANA test. Don't worry about what you might have, just be happy and thankful and celebrate.
Don’t get me wrong I am very thankful and greatful that it didn’t come back positive. I just wanna know whats wrong me!
Unshoreandscared said:
Autoimmunes are difficult to diagnose. Feel blessed that your test results came back negative, I would trade places in a heart beat. Just know the test that detects Lupus is called the ANA test. Don’t worry about what you might have, just be happy and thankful and celebrate.
Hi Tiffany89, When this happened to me, that's what the doctor said was happening , " FIBROMYALGIA" , but that's for the doctors to say to you !! It's really hard to deal with that , can't really move the way you want to , do nothing , or hold things, i know exactly how & what you are going through , but be strong and hold on to your FAITH , okay , take care and hope that you feel better soon .... Beverly L.
Ty u so much! The part that gets me the most is being fatigued! And in pain on top of that is the worst!
Beverly L. said:
Hi Tiffany89, When this happened to me, that’s what the doctor said was happening , " FIBROMYALGIA" , but that’s for the doctors to say to you !! It’s really hard to deal with that , can’t really move the way you want to , do nothing , or hold things, i know exactly how & what you are going through , but be strong and hold on to your FAITH , okay , take care and hope that you feel better soon … Beverly L.
No I dont have a rheumy. I have to wait to be referred so my insurance will pay for it. I’m just hoping that they’re going the right way with this!
Angel312 said:
It has been my experience that Lupus is a very tricky illness to dx, and it can take quite a while to dx as well. When I was in the hosp the last time (I’m a frequent flyer) my bloodwork came back as though I was in remission, but I sure didn’t feel like it. However, another blood test they did came back positive for RA…go figure huh? I guess it’s never out of line to get a second opinion…if you deem it appropriate. My Rheumy is wonderful and it took forever for him to dx me, but I feel confident in his work. I assume you are seeing a Rheumatologist?(sp?) I wish you luck…and don’t give up…these stupid autoimmune things are tricky…
Ty! It helped a lot!!!
pjarden said:
WebMD has a good article on the tests for diagnosing lupus, which I’ve included in the link below. Hope it helps.
pax, pj
INFORMATION FROM WEBMD
Lupus Lab Tests and Results: Diagnosis and Evaluation of Lupus
http://lupus.webmd.com/guide/laboratory-tests-used-diagnose-evaluate-sle
To view, click on the address above or copy and paste it into your Web browser. _______________________________________________________________________________________________________
Web MD is a very reliable resource....it's the only one I would trust.....
Tiffany89 said:
Ty! It helped a lot!!!
pjarden said:WebMD has a good article on the tests for diagnosing lupus, which I've included in the link below. Hope it helps.
pax, pj
INFORMATION FROM WEBMD
Lupus Lab Tests and Results: Diagnosis and Evaluation of Lupus
http://lupus.webmd.com/guide/laboratory-tests-used-diagnose-evaluate-sle
To view, click on the address above or copy and paste it into your Web browser. _______________________________________________________________________________________________________
Yes Goldie , that's very true it - "it is much harder to to function without sleep from Fibro, ( i couldn't lay down / sit down nor stand for any length of time ) . I would cry for hours at a time , wanting tojust go to sleep, so the docter gave me to pain injections of morphine , to help loosen the muscles and man i passed out like a new born baby for about 2days , now that was the best sleep i've had in a longgggggggggggg time !!! LOL But of course we should not have to look for that to be our only way to get the rest that we don't get , the doctors should come with some kind of way to CURE this LUPUS stuff .... Beverly L.
Goldie said:
Hi Tiffany
FIBROMYALGIA is a huge part of Lupus. At least for me it is. According to my rheumy, that is the biggest
complaint of her patients. The pain is often unbearable, and it is so very frustrating. It is hard to function without sleep, caused by The dreaded pain. I hope for your sake that you only have Fibro. and not Lupus or R/A. While it was nice to finally get a diagnosis, I would have rather heard something else. I know a few other gals with Fibro, that have been off work for weeks, months, then are fine. Take care of yourself, hope you get your answers soon.
Goldie
Tiffany, I'm so sorry you have to wait to be referred to a Rheumy....BUT....you certainly don't want to go before that or financial probs will be added to your list of stressors...ugh! You don't nd that ;( Hope they don't drag their feet on the referral....as Insurance are notorious for. When you're up to it, you might want to see where they are with that, (not telling you what to do, just thinking out loud).
I hope things are looking a little better now. Never give up and use resources....I'm sure anyone here would be glad to chat if you needed to talk to someone. I've only been diagnosed for a little over a year so a lot of "THIS" is new to me, but I'm learning....these groups sure help me a lot.
Take care and I wish you the best....
gail
I went through the same exact thing when I first started with symptoms of Lupus. The doctors would tell me, "you have some symptoms but not enough to be Lupus." Then I got false positive results and negative results. Finally, I came across a doctor that said, " we are running two and three more strands of my blood which showed I had Lupus. That was about ten years after starting the symptoms. Lupus is a very frustrating disease because there are so many other conditions that have almost the same type of symptoms. I hope that you will find the results soon. Hang in there. I have had lupus since the late 1990's and I am still experiencing new things all of the time. I use to beat myself up with why me, and guilt for putting my family through any of this. The one thing I can tell you is to draw strength from anywhere you can it in a positive manner. It will pull you through the rough spots.
It took 4 months for our daughter to get diagnosed. There is no "test" for lupus. Our daughter was diagnosed with ANA negative Lupus. My ANA was positive. She eventually got a positive test but it was yrs later....she was 14 when diagnosed. Make sure you are seeing a Rhuematologist. It takes a specialist that through symptoms and tests they can get to the bottom with a diagnoses. I sure hope this helps. Hang in there!
I had no such luck. When I received the positive ANA, it was confirmed rather quickly that I have Lupus and my meds started right away. Depression set in quickly and denial was apparent, but, I still took my meds as directed and slowly but surely, I began to feel better almost instantly (within a month). So blessed. Then recently, I went for a second opinion at Johns Hopkins (not the best experience) I was then confirmed to have SLE lupus, stating, I met all the 4 of the new criteria for SLE lupus and a positive ANA. But, the good news is, the other medications took were not necessary and the Hopkins RA consulted with my doctor and took me off the other meds only kept plaquenil. So, this journey is very sporadic and if you are blessed enough not to have SLE Lupus or an inconsistent test then be blessed and move on with your life. Don't look for the zebra amongst horses, keep the knowledge in the back of your mind but move on with your life, maintaining your health and only acknowledging the zebra when he rears his head... I wish I could.
Blessings
In reply to Unshoreandscared...I too received a quick diagnosis because my ANA was extremely high , all my blood work was crazy do to the effects of the lupus. My daughters was not as easy but she was young and the Rheumy said that it does not show in tests in young adults the same. Our daughter started with lots of inflamed lymph nodes, inflamed painful joints and rashes.....really bad butterfly rash. She had 7 of the 11 symptoms. Luckly Hershey Med had the top in Pediatric Rhuematology at the time and she new right away. Plaquenil does ok for her but she still has to take muscle relaxers and pain killers. She is now 30 and married with our beautiful grandson (20months) living in Germany while her hubby serves in our Air Force.
I am on chemo injections weekly, muscle relaxers, vicodin, folic acid as well as hits of steroids. I say find a good Rheumy that has lots of lupus patients. They know the disease well. An ANA is just one of the tests....but no test is a test for lupus. It takes tests as well as symptoms and a great Rhuemy to help to get to the bottom of your symptoms. Don't give up you are not crazy. You know your body. No one should live in pain. Message me anytime!
Thank Pam C for the ringing endorsement and thank you for the wonderful encouragement about your daughter's marriage and son. That is one element to my life the RA at Hopkins told me, I will be able to have children and stay on Plaquenil, so I am hopeful, I will get out of this funk and get a husband soon... Thanks again for the support and encouraging words.
Pam C said:
In reply to Unshoreandscared...I too received a quick diagnosis because my ANA was extremely high , all my blood work was crazy do to the effects of the lupus. My daughters was not as easy but she was young and the Rheumy said that it does not show in tests in young adults the same. Our daughter started with lots of inflamed lymph nodes, inflamed painful joints and rashes.....really bad butterfly rash. She had 7 of the 11 symptoms. Luckly Hershey Med had the top in Pediatric Rhuematology at the time and she new right away. Plaquenil does ok for her but she still has to take muscle relaxers and pain killers. She is now 30 and married with our beautiful grandson (20months) living in Germany while her hubby serves in our Air Force.
I am on chemo injections weekly, muscle relaxers, vicodin, folic acid as well as hits of steroids. I say find a good Rheumy that has lots of lupus patients. They know the disease well. An ANA is just one of the tests....but no test is a test for lupus. It takes tests as well as symptoms and a great Rhuemy to help to get to the bottom of your symptoms. Don't give up you are not crazy. You know your body. No one should live in pain. Message me anytime!
That is soooooooooooooo , beautifully said Pam , couldn't have said it no better!!!!!!!!!!!!!!!.... Beverly L.
Pam said:
I went through the same exact thing when I first started with symptoms of Lupus. The doctors would tell me, "you have some symptoms but not enough to be Lupus." Then I got false positive results and negative results. Finally, I came across a doctor that said, " we are running two and three more strands of my blood which showed I had Lupus. That was about ten years after starting the symptoms. Lupus is a very frustrating disease because there are so many other conditions that have almost the same type of symptoms. I hope that you will find the results soon. Hang in there. I have had lupus since the late 1990's and I am still experiencing new things all of the time. I use to beat myself up with why me, and guilt for putting my family through any of this. The one thing I can tell you is to draw strength from anywhere you can it in a positive manner. It will pull you through the rough spots.
Thanks Beverly L;) I try to be encouraging as much as possible. It's a tough disease and makes you very weary. I remember when I got my diagnosis I handled it ok cause we had already dealt with it so many yrs. Watching our daughter go in and out of hospitals & constant Dr appts that I guess I was almost numb to it...but our daughter cried when she heard. Because she knew what I was in for and it broke her heart. I cried with her not for my diagnosis but because NOW I knew what all her pain felt like and as a Mom it just ripped my heart out. To know that all those yrs she was hurting that bad. NO one truly knows our pain unless they live with this disease. They can empathize but they have no clue how hard it is to deal with it day in and day out. My heart goes out to each of you as a Mom and as one suffering. Praying for better days ahead for each of you!