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rosiedi
11-12-2007, 04:40 PM
Hi I'm Rosie, 29 years old and I was diagnosed with Lupus 2 weeks ago.

The rheumatologist wasnít interested in answering any questions, he just said:
ē itís not that serious,
ē donít read the internet (because what you read isn't true),
ē take this medicine (plaquenil), and
ē stay out of the sun

Iím sure there are other things I need to do? If I hadnít looked at the internet (against his advice) I would know absolutely nothing about what I had at all. The blood test I had said I had a homogenous pattern and a titre of 640.

I first went to the doctor after suffering excessive hair loss, who did a blood test where ANAs showed up. I already suffered from extreme fatigue. After that I got rashes when in the sun, pain in fingers, toes, swelling, mouth ulcers sore throats and more. First trip to specialist he said I didn't have lupus, but my doctor sent me again and he changed his mind.

Saysusie
11-12-2007, 07:36 PM
Hello and welcome to our forum and to our family :lol:
There are some doctors who truly appreciate an educated patient. They can see the benefits of having a patient who is pro-active in their health care. Then, there are those doctors who are threatened by an educated patient. Who want a patient that asks no questions and just follows their instruction with blind faith. I say, for those of us with Lupus, it is imperative that we become educated about this disease, about its symptoms, about its treatment, about its medications and about how Lupus affects each of us differently. So, I say to you...stay on the internet, come to us with any questions you may have, read books about Lupus, learn how lupus affects you, and become an educated patient who is an advocate for your own health and who can make informed decisions WITH your doctor and who will question your doctor about his decisions, treatments, prescriptions etc.
The next time that you see your doctor, tell him that you appreciate his advice, but you prefer to become extremely knowledgeable about this disease and that you will get that knowledge from ANY PLACE that YOU feel is appropriate. Furthermore, if he chooses to continue to provide you with little to no worthwile information, it would be in your benefit to get answers and information elsewhere - since it obviously will not be coming from him!
You may come to us with any question, concern, or request for information and we will do our very best to provide you with what you need! You are not alone :lol:
Peace and Blessings
Saysusie

rosiedi
11-13-2007, 02:07 AM
Thank you so much saysusie, I really appreicate your support and advice.

Saysusie
11-14-2007, 07:10 PM
You are most welcome!

Peace and Blessings
Saysusie

jynclr07
11-15-2007, 10:03 AM
ē donít read the internet (because what you read isn't true),


I fired my last primary care physician because she didn't want me to read the Internet. Sorry, but I WILL be an educated patient. Don't listen to this advice. Stay online and learn. :)



ē take this medicine (plaquenil), and


I'm on this as well. Just started on Monday. We'll see how it goes.