I honestly have no idea what to say here but I need some help. I have always been one of those people that didnít go to doctors unless something was really wrong. I am 41 and for the last 9 months to a year my health has gone downhill but I thought I was just getting older. I was tired all the time and my body ached. My head would hurt and my memory is shot. I know what I want to say but it feels like the word is just out of reach. I feel so stupid because some days I canít finish a simple sentence but I just thought it was because I wasnít 20 anymore.
I had also been having chest/left arm pains for 6 months or more and then I began having difficulty breathing. Right before Thanksgiving I went to the ER thinking I was having a heart attack. My BP was off the charts but everything else was OK. They sent me to a cardio who did ultrasounds, stress tests, the whole 9 yards. Everything was fine. First of Dec. I went to a GP who talked to me and started asking about things I didnít think had anything to do with this. Did I have any strange rashes? Yes! Sometimes they even leave scars (my neck is covered with them). How do I sleep? I can sleep for days and never feel rested. On and on we went. He did some tests and when I went back he said that it appeared my immune system was ďconfusedĒ and sent me to a rhumy (yes, I like that term yaíll use because I donít have to spell it out).
After looking at the positive ANA and discussing my symptoms (joint pain, muscle pain, loss of memory, rashes, confusion, strange dreams, exhausted always, hair loss, breathing difficulties etc) he said he believed that I had lupus and put me on plaquinel (?) along with all my other meds. He did more tests and I picked up a copy last week. Everything is negative. Even the ANA that was positive originally. I am not better though. I not only have the rash back on my chest /neck/back I also have the butterfly rash on my face. The knuckle on my thumb is not only sore but now swollen and red. There is no part of me that doesnít hurt and sometimes I just want to crawl in bed and stay there.
My fear though is that this doctor is going to say I am fine since all the tests are now normal. I do have pictures of the rashes in case they are gone before Wednesday but what else to I need to do to make him see that I donít care what the test results say. Something IS wrong. I am sorry to have rambled and I am sure I left out half the things I should have said but I am new to this and any help would be appreciated.
I am only about 15 months into this thing called Lupus, so I know I'm not the "authority," however, I can tell you that lab results ebb and flow, depending if you're in a flare or not. Always ask for copies/keep copies of your lab results and keep a symptom diary. What doesn't seem particularly important now, could be important 3-6 months from now. i don't trust anything to memory, especially with the brain fog issues.
Don't despair becauseyour labs are now within normal limits. It took me several months to see the benefit of Plaquenil. Since starting Plaquenil, my labs are also in the normal range if I'm not in a flare.
I'm sorry to hear of your diagnosis, but many of us can understand why you would be relieved at finally having an explanation for your symptoms. There is no cure for Lupus, however, there are many meds that can make your symptoms bearable and you can, hopefully, regain the energy that you once had.
Please let us know how your appt with the rheumy goes on Wednesday. Oh, and take the photos with you--and anything else that might clarify things-to the appointment.
I just want to reiterate what Bonus Mom has said. It is quite normal for our lab results to go from positive to negative. Especially if our medications are working and if we are not in a flare-up. Just because your labs are normal, that does not mean that you do not have this illness. It, more likely means that the Plaquenil and your other meds are working. The goal is to keep you lab results in the normal range and to prevent future flare-ups.
It is quite possible for Lupus to be active, but for the lab results to be normal. Many times, the skin manifestations, the fatigue, and the aches and pains will not register on lab results.
As Bonus Mom suggested, keep a daily journal of your symptoms, how you feel, when you feel bad and when you feel reasonably OK. Insist that your doctor go over your journal with you so that you both can work together on your treatment regimen.
We are here to help you in any way that we can and to give you support. Especially, to let you know that you are not alone!
Peace and Blessings
i can't add anything to what bonusmom and saysusie have said. They are two of our most knowledgeable members. We have all experienced the roller coaster lab results, and it can be so frustrating.
When you see you dr., if you have any questions please know we are here to help.
I just wanted to say "Thanks" to those that answered. I have seen the rumy and my GP this week. Due to the lab changes they have changed my dx from SLE to SCLE, firbo and som undiagnosed lung issue that I have to go to a specialist for. I called in sick for the very first time due to this illness today. It is 20 degrees and none of my joints want to move
Reading this site and one other has made me feel better though. I don't feel so alone now and that is a very good thing. Thanks again