I have been diagnosed with many ailments over the years and just recently started learning about Lupus. Looking back, I have had symptoms since early childhood (like an arm that dislocated so often the doctors taught my mom how to put it back in place). By the time I was 12, I was diagnosed with PID for the first time. (I have had it 3 times since, have never had an STD.) I was diagnosed with photosenstive epilepsy at 18. I also had my first kidney stone at 18 and have had 4 more since. Last summer I had surgery to remove two stones to alleviate hydronephrosis. I struggle with cysts, endometriosis, and IBS. I've always just kinda lived with the pain. This past fall I started having trouble walking upstairs. It was like my knees would just give out. Again, I just lived with it.
Now I'm having constant abdominal pain and bloating, extreme fatigue, and last week developed the butterfly rash on my face. (Which is what led to internet searches and Lupus.)
I avoid doctors. I usually don't go unless I feel like I'm dying...but I have a doctors appointment today. I expect to leave disappointed like always. When I was in the emergency room a couple months ago, the doctor literally looked at me and said 'I don't know what you want me to do, there's nothing surgically wrong with you.' He gave me pain meds and Zofran and told me to follow up with my primary care doctor. My primary care doctor had said the next step would be exploratory surgery.
I would love to hear how long it took to get a diagnosis and if there was any one symptom that made the Lupus diagnosis clear.
I think it was easy for me to be diagnosed because my mom has it and I started showing the same symptoms she had.. Scars that take forever to heal, tiredness, hair falling out, and lots of pain.... So I went to her Doctor that sent me to a Rhumy that ran test and the next week she said the test came back positive.. I hear it's a very hard disease to diagnose and I hope you get some relief soon.. It can really get frustrating to know something is wrong and they can't seem to pin point it..
Much of the trouble with getting diagnosed is that doctors are not all very educated about it. My best advice for getting diagnosed properly is to do a little research, find a rheumatologist in your area that knows Lupus, and get a referral to that one. PCPs are unreliable for knowing much about Lupus (mine certainly didn't), but even when it comes to rheumatologists, not all are versed in these atuo-immune issues we face.
It seems like the two biggest indicators that help diagnosis are positive ANA blood tests and a butterfly rash. However, it is possible to be diagnosed without either of those. I myself am ANA negative... all my blood tests show up normal. (Yay. ::sighs:: ) I did, however, finally get the butterfly (malar) rash, and with my other symptoms, my rheumy declared it Lupus. My diagnosis took ten months of seeing my rheumy, but I had seen my PCP about things a year or two previous to that, and had been tested years ago several times for Lupus, so ten months isn't really an accurate indication of my journey to diagnosis.
Best of luck hon, and hang in there. We understand what it's like to be hoping and looking for a diagnosis, not because we are seeking attention or WANT Lupus, but because we just want a name to put to our suffering and a means by which to see our way forward. ::hugs:: Stick around, read and participate... this is a great group who understands your struggles.
Your story sounds an awful lot like mine, including the dislocations, the IBS, the cysts, endometriosis, and kidney stones, even the bad knees. I'm still not diagnosed, and just had my first rheumatology appointment last week, and I'm waiting on bloodwork. I had a hysterectomy two years ago (I'm 37 now) for the endometriosis and I am SO glad I did. I started with exploratory/treatment laparoscopies at age 21 and had 5 before I finally said I'd had enough and I wanted the plumbing out.
I'll post as soon as I hear something from my doc, good or bad!
Wow I’m so sorry to hear about your trouble, I was diagnosed at 19 when I was pregnant with my son and it was a low blood platelet count that was cause for concern. Prior to that I can’t really remember any symptoms except feeling extremely fatigued after spending time in the sun. A friend of mine has been having issues with muscle weakness with her legs for about 2 years to the point when she literally can’t support her own weight but the doctors have no answers for her. She’s had a multitude of scans, blood draws, all kinds of tests, etc. Although my diagnosis was quick,so to speak I can understand the frustration that comes with knowing something is wrong but not knowing what
I am 65 years old now and my life has also been weird with lots of pain and weird symptoms but did not get diagnosed until I was 62 years old. I can still remember people asking what is wrong with your face (butterfly rash).
I am 68 and have had symptoms for at least 16 years but was just diagnosed this year. I was told in 2008 by a rheumatologist that I did NOT have Lupus, so I gave up trying to figure it out! That is until January when I was having yet another high blood pressure episode (217/137) with heart attack symptoms AND the burning, itching butterfly rash. The ER doctor spotted it immediately, and then my cardiologist saw signs of inflammation and damage in my arteries when he did a heart cath. He said it was what he sees in his lupus patients. He referred me to an excellent rheumatologist who, not only diagnosed it correctly, he said I clearly had it in 2008 when I was told I did not. He requested the tests from the first rheumy and said all the evidence was there all along including blood tests. He is as puzzled as I am as to why the first doctor insisted that I didn't have it! It certainly has been frustrating! But - the good news is that I now have a great team of doctors working together to keep me as healthy as possible. Keep looking - you'll find the right doctor and correct diagnosis sooner or later!
I was born with swollen glands and kept getting a lot of random illnesses all my life. Finally at age 21 I was diagnosed with lupus.Many other aunts, uncles, siblings, even my Mom had the same story of just being "sickly", and after my diagnosis, they all went to get tested, and they all have it too, on my Mom's side. Then Mom remembered HER uncles being so sick they couldn't function. They called it internal rheumatism 100 years ago. I bet you anything it was Lupus. We found a death certificate of a family member, and it said "myositis, rheumatism and kidney failure." That was in the early 1800s. I bet that was lupus too.
Hello Carrie
I’m my self recently been diagnosed with lupus as well ,I’m all new to this expirions too but one thing I defenetly can assure you that you have to do antibody test and urine and you allready have the butterfly rush ( that is pretty clear simptom of lupus) in 2-3 weeks you will know where are you standing.But it’s better for you to go to the doctors ( as much as you are sick of all of them )
Because it’s always better to know then assume …
I wish you a lot of luck and pain free
I had wierd rashes, like bleeding under the skin, on my arms. My son freaked out and made me see about it. They ran the ANA test and it came back positive. The followup RNA test was off the charts. Hence lupus was diagnosed. I have had a bunch of wierd ailments thru the years and now I know why.
I struggled with joint pain, pacemaker for complete heart block when they had no reason for me having it, kidney stones, rahes, sun sensitivity, and who knows what else. My GP did the initial diagnosis after had I several years of worsening symptoms. Rheumatologists, I've found, are not as willing to diagnos it. I can't even understand why. As we know, the test results and symptoms are ever changing and elusive. I did, luckily, find a very kind doctor who got me through the intital treatments. I then ended up with some really bad MRSA infections (again, no one knows why, as it has always been septic or in my bones/organs, never on my skin), and that ended up paralyzing me and I am on disabilty for that as well as the Lupus. My fatigue has gotten worse, and I have liver damage and PCT (porphia Cutana Tarda), in which my skins, especially hands and face, blister from very little sun. I also have Hemachromatosis(iron overload disease) which has made my arms and legs a dusky purpleish gray color.
My doctors attribute most of my symptoms to SLE. In a way, I am fortunate. Because I have been so sick with the infections, it has forced them to recognize and treat the SLE. I hope you get your diagnosis. It can be emotionally draining to have people not understand your condition.