Trouble with Rheumatologist

[0EmilyWanamaker0]

I believe it was in February when I saw a new Rhumie. I had a woman who wasn't the one I was supposed to be with, but she was a stand in because the one I was meant to have quit. This woman didn't really know that she was doing. She was talking down to me, and since I'm a teenager, she spoke to me as if I was 5. I had to list my symptoms, which involved joint pain, difficulty with the sun, the butterfly rash, etc. I also talked about nerve pain. That was the only thing this woman listened to. After that I had to run around the room, jump, and lift my legs, I was in so much pain. She didn't feel the need to do another blood test. (As she is not aware that it can take years to diagnose lupus.) and told me that the blood tests were 100% accurate. But she diagnosed me with A.M.P.S. She told me that to combat the pain, (And I am not kidding, this is what she told my mother and I) I need to run laps, have my mother and father gives me lots of hugs and massages, have my mother brush my hair, and hold onto extremely hot mugs. My face was red, as I tried not to cry. We later received our bill. My mother tried to complain about how this woman treated me, and we were told that the woman did everything right and that there is no point of us complaining. The woman only payed attention to me when I told her I had nerve issues.

[LupusKaren]

Shocking, I am so sorry you had to go through this debacle. I can only strongly suggest a second opinion, and perhaps ask your parents to do some asking around for recommendations.

[KayHimm in reply to LupusKaren]

Lupus is a very complicated diagnosis based on both clinical and laboratory evidence. The ANA is only one screening tool. Some people become positive as time goes on. But from what I have read doctors would need a lot of specific symptoms of lupus to diagnose ANA-negative lupus. You may have other positive tests that point in the direction of autoimmunity. There are many similar autoimmune disease so they do not want to prematurely diagnose someone. Highly specific symptoms like photosensitivity, hair loss and certain rashes raise suspicions even with a negative ANA. Did the doctors tell you what they are leaning towards? Being observed for these types of illnesses can be long and frustrating. I know how hard it is to feel so bad and not know what is wrong.

[KayHimm in reply to LupusKaren]

Sorry, I my message was in response to another member. I made a mistske

[Paul_Howard Partner LUPUS UK]

HI 0EmilyWanamaker0 ,

I'm sorry to hear about your bad experience with this consultant. As others have already suggested, it is probably worth seeking a second opinion. The best centres for Adolescent Rheumatology at UCLH (London) and Alder Hey Children's Hospital (Liverpool). If you are relatively close to either of these hospitals, they would be the best place to get a referral. If these are not accessible for you, please let me know whereabouts you live and I can provide information about lupus specialists we know nearer to you.