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How do you get diagnosed?
dsreed5 posted:
I am 49, I had a baby, stillborn at 29 weeks, in 2000. After an autopsy and some tests a perinatologist said he thought I had lupus. I was sent back to my primary care doctor and given the run around trying to see rhuematologist. I had three young children at the time and gave up before I had any answers. I now have cardiomyopathy and chf. I just always seem to get blown off until they couldn't miss the enlarged heart and fluid build up. After hearing and reading some of the comments on this sight I feel like I should have tried harder to get a diagnosis before my heart was affected. I do not have any blockage or other visible problems. In March of this year I had elevated kidney enzymes. Now I am wondering if this is all because I actually so have lupus and something could have been done to prevent some of this. How do you get a doctor to listen without wondering yourself if this is just all in your head?
SafariMom responded:
I am going to the doctor next week to test for Lupus myself. I have many of the symptoms including sun sensitivity and malar rash, yet I am afraid he is going to think I am crazy.

I am bringing with me a long list of labs that I want to get checked. I am also bringing with me a long list of all my symptoms, what makes things better and worse, any medications,etc.

Be proactive- like you are doing, and keep searching for a doctor that will listen. This is Your Life, Your Health, you have to be proactive with your health. You know your body, so your not crazy ! As for looking back and wondering if something could have been prevented... you may never know. I am so sorry that you have experienced the loss of a child, and are having these medical issues. If you do find out that something could have been prevented, use that knowledge to become active on various health forums and help to prevent more health problems in others.

I am sending you a hug today -

Good Luck !
Elizabeth_WebMD_Staff replied to SafariMom's response:
Hi dsreed5 and Welcome -

Your discussion posted twice so I wanted to include this response from Lisatru62 -

"Getting a doctor to listen is sometimes the hardest part. You just have to be persistent. I had lupus symptoms for 10 years and was told it was a common rash, you are pre-menopausal, your stressed and even I need therapy. I never gave up.

I finally got mad and demanded to see another doctor in dermatology. She was my turning point. My rash looked autoimmune related but not lupus specific. She ran some blood tests.

I am thankful that I kept at them and finally found a doctor who had the insight to know what an autoimmune rash looks like. Since then I've been tested to death and have found out that my lupus, left uncontrolled has caused many other health issues.

Don't let them tell you you are crazy. Keep at them and eventually you will find the right smart doctor. Good luck.


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