Getting a correct diagnosis of lupus from Rheumatologist

Hi, I am new to this site and don't normally ask questions on the internet. My primary care doctor recently took multiple blood tests, poured through 20 years of my medical records and told me I have lupus. Last summer I was diagnosed with stage 3 kidney disease, have had multiple bacteria infection s since last April. I have been hospitalized three times since the end of April last year. In August I had a bad case of shingles. A few weeks ago I found out that what I thought was a bladder obstruction is a bladder that no longer works. I am going in for interstim surgery to help that. I have kept a journal since I was diagnosed with lupus. I have fevers almost daily between 99-101 degrees. I have multiple joint pain, mouth sores, a red rash across my cheeks and nose. Nausea and vomiting every few days. My fingers turn bright white when they get cold. I am often exhausted and feel like I have a bad case of the flu. I also have arthritis and hypothyroidism. What I'm afraid of is that when I go to see the rheumatologist for my first visit that he will tell me that I am too old to have lupus. This happened two years ago when I saw a rheumatologist with the red rash across my cheeks and nose. I am 56. Does this sound like lupus or something else. It was a relief to finally get a diagnosis. I have been sick for a long time.

Couldn't get an appt until Feb 6th. In the mean time I see a pain management doctor who I have seen since 2005. It was at her request that I get some kind of answers before I get worse. I'm just frustrated with all of this. My body is falling apart and nobody knows why. Thank you for your quick response. I appreciate it.

I was in my mid 60s when I got it. Anybody at any age can get lupus although it is most common for women in child bearing years. I do not fit that description!

Bill

Combination of clinical symptoms and labs which is how most are diagnosed. Labs alone do not diagnose lupus although there is a lupus panel that looks at autoantibodies commonly associated with lupus. Lupus can be very difficult to diagnose and can mimic other diseases so it is not easy particularly if you are seeing a PCP or a rheumy who is not experienced.

Every patient presents with a different set of symptoms and if you have say, a positive ANA but no symptoms you might or might not have lupus. One of my docs, a hematologist guessed I had lupus based on low platelets and RBC after running many tests including a bone marrow biopsy and finding nothing. 2 months after his guess I became symptomatic and labs confirmed the diagnosis.

This is a good guide to diagnosing it.

http://www.lupus.org/answers/entry/diagnosing-lupus

Bill

My primary care doctor called me on 14 Dec to tell me that all my autoimmune blood test were positive and read through all my medical records. She said it read like a textbook for lupus. Since then I have journaled all my symptoms and fevers everyday. I know I will be overwhelmed when I get there. On top of everything else my nephrologist says there is no way that I could have lupus. And my stage 3 chronic kidney disease is not caused by lupus or my high blood pressure that he can't believe that I have been taking meds for for 30 years. But he can't tell me what is causing my kidney disease. So maybe having my daily journal will speak for me with my new rheumatologist. One can hope. I just want some answers and things to slow down.

Haven't had a biopsy yet. I'm changing nephrologists. I've had this one for six months and he doesn't allow me to ask questions and announceced,' oh yeah you have about 50 percent kidney usage left, but you can live with that. Changing doctors.

I was also in my mid 50's when diagnosed.

Hi all, I am new to this site and also newly diagnosed with discoid lupus. I had negative ANA test but a horrible rash on my face that has only cleared up with clobetasol and tacrolimus. The rash started back in late August and took a combination of 3 doctors to come to the conclusion of DL. Also I should mention that I started taking plaquenil 2 weeks ago. I'm figuring out with trial and error what triggers these flare ups.
My big question to everyone who has the facial rash is have you experienced it being isolated to just one side of your face? Mine is on my left side, all the way from my brow line down to my middle cheek and from my nose to the hair line by my ear. It's not as bad on the right side, two weeks ago it started just at the corner of my eye right now and trying to keep at bay before it gets any larger.
Any insight would be great! Also I am extremely grateful I found this site. I feel very alone in this and now know I am not.

Thank you Lynnwood.
Actually my dermatologist recommended I do that as well. I am a medical sales rep and spend a lot of time in my car so it makes sense to do that.
My rash is so bad right now that my right eye is almost swollen shut. It's rather embarrassing and disfiguring. I'm going through a very emotional time right now with my recent appearance changes.
Have you ever heard of anyone else getting swollen this bad with a flare?

Thank you Melissa, I will look into it today for sure.

I was also recently given a Discoid Lupus dx from a skin biopsy on my scalp. I did not have the associated hair loss, but it was scaly and itchy for a bit. Betamethasone works to calm it. Also have mild facial issues....redness and burning feelings that come and go.....and a rashy area in the inner corner of one eye. This all seemed to start after two trips to Florida and far too much sun.

I do also have a positive ANA and am seeing my third rheumatologist. The first one did run some tests....mostly inconclusive and told me to "keep my hands warm" - though I don't have any Raynauds at this point. He was also a jerk. The second one was very nice, but thought I had Psoriasis after seeing fungus on my toenail. My dermatologist was the one who seemed most concerned. So now I am traveling a bit to see a real specialist. Waiting for her interpretation of many labs.

I am new to this type of talking. There is no support in my area for lupus, so I do a lot of reading on the internet. In 2014 I had a positive ANA when I got dx. with pancreas divisum. My regular pcp blew my off when I asked about it. During 2014-2015 I look back and notice I was taking naps during the day, so exhausted from just regular outside work and my muscles became weaker. I had terrible joint pain and stiffness. Was so bad I would literally stand all night and chart,take care of my patients so I wouldn't have to sit, than get back up. I worked 12 hour nights in an ICU. about a yr ago I got pneumonia from a very sick patient. Missed 6 wks, during that time I developed upper arm weakness. Couldn't lift a cup out of the microwave. I changed pcps and she ran a lot of blood work and said I have lupus, started me on hydroxychloroquine and prednisone, adjusted a bit but now on daily dose. I waited 6 mon. to see a Rheumy and he said I don't have lupus I have fibramalgia and to take lyrica, which I had a bad reaction. Went to another Rheumy 3 mon later, Informed me my population have a small sliver of lupus on the pie chart, I have something else. He did lab, he adm he was perplexed, I did not have all the other things but could not explain my ana, He said I could have 10 autoimmune diseases, he would start me on hydroxychlor. and prednisone now but since I'm already on it, I will end up with lupus. Both of these dr's put me in their box and did not ask my history or how I felt. I wake up every day with a red cheeks, a purple red nose and red neck, mouth sores etc . My pcp does listen to me and adjust.I have gastroparesis and hypothyroidism, and PAT. I am frustrated with the rheumy's.