DIAGNOSIS... OR LACK THERE OF

I am quite bothered by the rheumatologist because she refuses to diagnose me with SLE Lupus. She has charted it as "mixed connective tissue disease." First off, I want to start out by stating that I am a nurse and I am starting my MSN (Masters of Nursing) in the Fall. I know all there is to know about lupus because I have done the bloody research and have talked to many lupus patients and many other doctors. I have done everything but print out the list of the 14 symptoms, highlight all 12 of my symptoms and list all of my other symptoms, and take it to her and say "look here. I have 12 out of the 14 and then some more when you only have to have 4" (this is from the Lupus Foundation and if you have 4 of these then it is lupus... www.lupus.org if you'd like to see the list). It frustrates me because all of my symptoms have been going on for years. You know the saying "if it looks like a duck, walks like a duck and sounds like a duck, then it's probably a duck"? That's how I feel right now; every possible sign is pointing to lupus, including my blood work, and no one will call it lupus. The only reason I truly care what they 'call' it is because I would like to participate in a clinical trial for lupus but you have to have a medical diagnosis of lupus. I can't be part of the trial without the diagnosis of SLE Lupus.

Has anyone else had trouble getting diagnosed with Lupus? If so, please reply and give me some advice on how to deal with this. I go back to the doctor on July 1st.

Mandolyn,

First of all, I'd like to welcome you to our forum. And secondly, I want you to know that for many many years I experienced the same frustrations you're having. My mother had lupus and I knew I had lupus. The reason I wanted a dx was because according to everything I had read, early diagnosis means early treatment, which means that perhaps the disease won't have time to progress as it would if it were left untreated. I also wanted to feel better.

I have often wondered why doctors are hesitant to make a dx and I do have my suspicions. Once lupus is on your chart, it will be there forever, and can potentially cause lots of problems in the future when it comes to getting or changing insurance plans. I'm married to an attorney who works with a lot of physicians and I know that doctors are more scared than ever of litigious patients, and lupus is something that is so difficult to diagnose that many doctors go overboard in being cautious about giving a patient a dx. They don't want to make a mistake. However, those are just my hunches.

But that doesn't help you. I think the advice Linwood gave you is excellent. I was seeing a rheumy (my second one) for a few years and felt like he just didn't listen to me at all. I felt horrible, had over four of the criteria, and he prescribed flexeril because he said I had a sleep disorder. When I finally changed doctors, I received a dx within months. Since then I've been on several different meds and finally am coming back to life. I had the same experience with doctors 20 years ago when I had thyroid cancer. It's a good thing it was slow growing and had not metastasized because it took appointments with several doctors before someone listened to me and worked to find out what was wrong.

It is for these reasons that I try, whenever I can, to go to women doctors. Although they aren't always, I find that they do tend to be better listeners, more compassionate, more approachable, and have experienced the same kind of dismissive attitudes we lay people.

I wish you the best of luck in your search for someone willing to explore answers with you. And come back. I think you'll find that this forum is full of wonderful folks who truly care about each other.

Pat

Hi Mandolyn,

   Welcome to the forum. I can't offer any more advice than what you have already been given. Just wanted to let you know we understand your frustration and hope you get a dx soon. Take care and keep us udpated.

                                                              Babs

Thank you all for the warm welcome and advice! This rhuemy is my 2nd in 7 months and both have been females. I have asked her directly why she does not believe I have SLE and she only responds "you're tests don't show it and you don't have any of the symptoms" which is false. I have seen my own bloodwork and have researched what the levels are for a SLE dx and normal levels and my levels definitely indicate SLE. Also, I have taken pictures of the rashes, hair loss, video of me taking my temp to show that I get fevers of 102-103 often, etc. I researched a lot on MCTD and found that it is a mix of SLE, Scleroderma, and polymyositis and I am only presenting signs of lupus, not the others. I printed out all of the material that I could find, have highlighted and wrote down all of my questions and concerns with the dx. I will take this information and proof of symptoms to my appt on Monday and hopefully can figure out something from there. Maybe if she sees it put out in a chart form by signs, symptoms, and test results for each she will see that whatever it is that is attacking my body, it isn't MCTD. Thank you so much for your support guys! It really means a lot to know there are others out there that are going through, or have gone through similar situations and understand. I'll keep you guys informed!! Thanks again and have a great weekend!

Mandolyn,

I just wanted to welcome you to this place filled with wonderful people. I would think that if you wanted the lupus designation that you (with your symptoms and blood tests) should be able to get it. The way I understand it is that it is our autoimmune systems attacking our bodies and all the docs can do is categorize it by symptoms. They say I have MCTD but they didn't have that name until recently, just a collection of people with symptoms that didn't fall into the three diseases.

Hope all went well at the docs. Sorry you are here and suffering.

Stay Strong,
Sue

I went to the rheumy on Monday. She said she will not dx me with SLE, but changed my dx from MCTD to UCTD once I pointed all the problems with a MCTD dx. She also tested my blood sugar, iron, and creatnine levels in my urine. She called me with the results yesterday and my iron is 10.5, blood sugar was 69 (normal for a woman my age is 80-120), and I have elevated creatnine levels. I have a lot of issues with my spine (Akenosing Spondylitis, DDD, Spondylosis, Anteriolisthesis, and a rare anterior herniation of the T7-T8 disk) and she said that there was nothing that could be done for it. I am going to have to suck up the pain for the rest of my life according to the doctor. She prescribed me Plaquenil, Tramadol, Flexeril, and Meloxicain. It is just really hard knowing that I'm almost 22 and am going to be in pain the rest of my life. I haven't come to terms with all of it yet. Thanks so much for all your advice and help guys! I really appreciate it!