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mstddybr
01-19-2009, 09:14 PM
Hi Everyone,
I need help on writing a list of questions for my doctor. It seems that everywhere I go to find out information on lupus everyone seems to know what their "titers" numbers are and other numbers that I have no idea what they could be. I know what the ANA with reflex titers means but I don't know what my test came out to be. That is one of the questions I have for my doctor. I am so confused still since I just went to the doctor for a rash on my face, she ordered a blood test, which I'm guessing came out positive on the ANA since then she told me I had lupus. This was all within a week. I've read that it takes months and years to get a diagnosis. I called my doctor's office today to ask if she could send me to a rheumatologist because she prescribed meds (antimalarial and steroids 20 mg) but I don't feel comfortable taking them until the diagnosis is confirmed by a specialist. She's only referred me to an eye doctor since she thinks I am taking the medicine. I didn't have any other symptoms of Lupus like joint or muscle pain only the rash on my face which has little red bumps sometimes. They gave me the appointment for next Monday and they only took a message about my request to see a specialist. Anyway, I am really scared and don't know which kind of information I should know. I go through emotional ups and downs. Please help.

Danica01
01-20-2009, 02:11 AM
Let me start by welcoming you :D You have found a place where people will be understanding and loving. Lupus is a disease that is different for all of us. I would not worry to much until you see a specialist. A lot of people have a positive ANA and do not have Lupus. The rash is a symptom but the rheumatologist will do so many other tests that will either confirm you doctors diagnosis or they may look at you and say, I don't think that is what is going on here. I would first ask your doctor to please explain your first test results and how your original doctor came to the conclusion of Lupus. If the rheumatologist confirms that the original diagnosis is correct you can ask about the future and what you can expect. Always remember that Lupus is a very individualized disease and everyone has different symptoms and flares. I am very happy that you are not experiencing any other symptoms other that the rash :!: Please keep us updated on how all of this plays out. Be patient and please do not let it get you down too much. Remember that someone is always here to talk to you while you are going through this. You are not alone and the emotional ups and downs are very normal. Hang in there and know that we are all here for you :wink:

Angel Oliver
01-20-2009, 04:41 AM
Just to say hello and welcome. I can not advice you, but one of the members of this site i know will come and help you with their knowledge. Glad you found us.Everyone here are lovely.

Love Angel.xx

rob
01-20-2009, 07:22 AM
Hi mstddybr,

We have a couple of members here who are very knowledgable about the more technical aspects of Lupus, but I don't know if they could advise you on such a specific thing. I personally steer clear of getting into the complexities of blood test results because frankly I am not qualified to comment on such things.

If your questions cannot be answered here, I would ask you to still hang around and talk. There is a ton of practical advice to be had here on subjects like living with an Autoimmune Disorder and how to deal with your Rheumo/Dr more effectively. There are a bunch of understanding people here who have loads of support and encouragement to offer. Anyway, welcome to our group.

Rob

mstddybr
01-20-2009, 04:23 PM
I just want to be a little bit clearer about my question so that maybe someone can help me a little bit better.
I really don't have a question about the specifics of my case since I don't even know what my test results say. I am just wondering which questions would be important for anyone with this diagnosis to ask their PCP. What kinds of things are important for people who are diagnosed with Lupus in general to ask their doctor?



Hi mstddybr,

We have a couple of members here who are very knowledgable about the more technical aspects of Lupus, but I don't know if they could advise you on such a specific thing. I personally steer clear of getting into the complexities of blood test results because frankly I am not qualified to comment on such things.

If your questions cannot be answered here, I would ask you to still hang around and talk. There is a ton of practical advice to be had here on subjects like living with an Autoimmune Disorder and how to deal with your Rheumo/Dr more effectively. There are a bunch of understanding people here who have loads of support and encouragement to offer. Anyway, welcome to our group.

Rob