View Full Version : Recently diagnosed
03-14-2008, 10:38 PM
I've been recently diagnosed with Lupus /SLE and don't know too much about this disease and have been trying to learn more. My doctor doesn't fail in making me feel stupid when i ask questions about my condition. I went from nonbelieving to shocked to confused. There's times I don't know what to think or do. My first flare was about a month ago I felt like I was on my death bed for about a week and a half. I am donig better now but have developed a cough that won't go away. Iwent from getting sick about once a year to feeling sick most of the time since that first flare it's left me very frustrated.
03-15-2008, 02:31 AM
Welcome to the board....and soft hugsss. I'm still waiting to be "identified" lol. Sorry you been having a rotten flare. Think I'm building for one :( . This too shall pass...so hold on tight.
When I first presented it was in the form of osteo arthritis. Sudden flare in my legs from my knees clear down to my toes. So my family doctor started treating for that....but she was baffled because osteo arthritis usually comes on slowly...and this was WHAM! I woke up one morning and couldn't walk. It has spread rapidly through my feet knees hips ribs and jaw. And a host of other fun lupus related goodies.
My family doctor is a dream. She'll answer any question I have in a way that I understand. My rhuemy on the other hand is a nightmare, who doesn't believe in lupus. She says she's treating me for osteo arthritis, but she's using a drug that is NOT ever used for osteo but for rhuematoid or lupus or malaria.
It would seem she doesn't like to be questioned either...she just stares at me and refuses to answer...so I went to my family doctor who is going to have phone conference with her. I've made it clear I want someone who is going to investigate for lupus. This idiot hasn't even received the blood work to check it and cant be bothered with it.
Deep breath...my point is...dont give up...dont let a doctor take your right and NEED to know away from you. If you are not happy with this doctor go back to your family doc and explain that you need answers and see if they will refer you to someone else with better doctor patient skills :P
You're NOT stuipd...you need anwers. There are alot of very well informed people here...and it's a great sourse of comfort to have access to this kind of support.
03-15-2008, 01:06 PM
Hi Christina :lol:
Welcome to our family. As Sits-in-the-Corner pointed out, there are many people here who will be only too happy to answer any question that you might have. There are no stupid questions here and there are no impatient people here.
You, absolutely, have a right to know exactly what is going on with you, what treatments are being used, what those treatments hope to accomplish, what their side effects may be, what you might expect from this disease (although Lupus is extremely unpredictable) and what you can do to help yourself. If your doctor is not willing to help you with those issues, then by all means, find one who is. In the meantime, we are here to give you as much help as we can whenever you need it.
Peace and Blessings
03-17-2008, 09:41 AM
Welcome...how are doing today...
Stupid...hummm. Don't feel stupid...you know you are not, right? It is hard to know what questions to ask when we don't know what it is we have. We are just uninformed. Your doctor..socially inept...
Ah... you have Queitdaspklnisies...that's what it sounds like to us at first, to the doctor it is sooo obvious..and too secretive to share the ins and outs. So, we go on an endless search, in books, on the Internet hoping to find the right questions to ask...with your doctor I would assume no question will be the right one. I would seek another doctor if you can that will understand it is your body, your health, your life and you are entrusting yourself to their care.
Compassionate doctors are a hard find, knowledgeable doctors are a hard find...we have to find a fit. Gets frustrating....but keep looking...
Many here can help you, I can too in how to pose questions to your doctor, how to create communication....read about the forum, ask...