Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
I've had joint and tendon swelling, pain, and redness for a number of years that comes and goes. It affects most joints (fingers, wrists, elbows, shoulders, hips, knees, ankles, and toes). It is not symmetrical and migrates from joint to joint.
I had an event that was angioedema like but didn't quite fit true angioedema and the ER drs suggested I see a rheumatologist. I discussed this with my PCP and she sent me to a rheumy. The rheumy diagnosed me on the spot with lupus and sjogrens and then ran some tests. She doesn't give results on the phone and does it at a follow up visit, which mine was 2 months after my initial visit with her. When I had my 2nd visit, she told me it was mild lupus and then threw in RA, which she said I didn't have at my previous visit and my RF's have always been negative. She did not review the test results with me and just said my ANA was positive. I've never had a positive ANA and have been tested several times before. In fact, I had been tested a month prior and didn't have a positive ANA.
When I look at the criteria for lupus, I don't meet many of the criteria. In fact, maybe only 2 or 3 of the 11. I don't have any issues with my skin and am not overly sun sensitive, although if my chest is exposed to the sun for a long period I do get itchy. I have the fatigue, the joint/tendon issues, and now a positive ANA. I also have MS and fatigue is definitely a symptom of that so it's hard to say I have fatigue from lupus.
My question is, does your rheumy give you the actual results of your tests? How were you diagnosed? Do you have a mild case or severe?
I had an event that was angioedema like but didn't quite fit true angioedema and the ER drs suggested I see a rheumatologist. I discussed this with my PCP and she sent me to a rheumy. The rheumy diagnosed me on the spot with lupus and sjogrens and then ran some tests. She doesn't give results on the phone and does it at a follow up visit, which mine was 2 months after my initial visit with her. When I had my 2nd visit, she told me it was mild lupus and then threw in RA, which she said I didn't have at my previous visit and my RF's have always been negative. She did not review the test results with me and just said my ANA was positive. I've never had a positive ANA and have been tested several times before. In fact, I had been tested a month prior and didn't have a positive ANA.
When I look at the criteria for lupus, I don't meet many of the criteria. In fact, maybe only 2 or 3 of the 11. I don't have any issues with my skin and am not overly sun sensitive, although if my chest is exposed to the sun for a long period I do get itchy. I have the fatigue, the joint/tendon issues, and now a positive ANA. I also have MS and fatigue is definitely a symptom of that so it's hard to say I have fatigue from lupus.
My question is, does your rheumy give you the actual results of your tests? How were you diagnosed? Do you have a mild case or severe?
sorry for all this ..its tiring and such along process ..hope you have days of remission and can enjoy those days ..i made the mistake when i felt half way ok was i consumed myself in such depressing thoughts ..instead of enjoying the day ..now i changed that i take advantage a few days of littel remissions ..goodluck
I have never been to a dr that doesn't review all the results with me. Heck, my neurologist even shows me my MRI's and my PCP will show me every lab result test and read me reports of tests I've had done. It makes me a little uncomfortable that my rheumy doesn't share that information with me.
Yes, enjoying the good days is so important. I love it when I have good days. I hope you too start enjoying the good ones.
my rheumy did that same thing , didnt go over anything with me untl the last visit wehn i insisted to know what the reports say and "mean" .. you prob should be a little more pushy with him ..be pro active in your health ...this is along road i must say ..so you need all the help you can get especailly from the doctors and he is in a field to help us so that is his repsonsibility ..i get mad when dr's act ike that ...you only have this one life ..just like the dr's do .. you have a family and people you love and a life , im sure they woudnt want to be in your spot ..so tell him you need more from him ok ?
My GP suspected lupus back in 2006, but my bloodwork was always negative so he wouldn't treat me. Instead he sent me to a rheumy that wouldn't "talk" to me, and just wanted to prescribe meds without a diagnosis. After several months of the rheumy refusing to confer with me, I stopped going to him. Finally in 2008 two neuros diagnosed me with Polymyositis. After moving in 2009, I found a new doctor and gave her my history. Then in 2010, I got a long-term rash. She sent me to a derma in 2011 who did skin biopsies, which showed lupus also. I understand that it's difficult to know where polymyositis ends and lupus begins. That's how it is with overlapping autoimmune diseases. Make sure you're comfortable with your doctor(s). My current doctor is willing to discuss things with me, and she thinks outside the box. In addition to being an M.D., she is holistic, which I like. Best wishes to you.