WOW. Your ANA titre is VERY high. Your sed rate is moderately elevated. When you have a lot of bad symptoms it can make its way to 100 with no problem. Mine was 100 when I was diagnosed. Keep an eye on that one.
Well I can't get my cursor out of this quote, so will respond to you this way
I have started a file, and will put everything into it as I get copies of it. And I will keep my eye on the Ana thing, and sed rate. and the Ana titre.
Are you still on prednisone? If you are, stay on it.
I am not on prednisone yet. I didn't ask for it, so I didn't get it I guess. I can ask my rheumy to put me back on it. I really did not want to start it again, because it made me gain so much weight. but like someone else said earlier, if all you can do when you are skinny is lay on the bed, then what is the point?
Yes, those other blood tests will take about 10 days to get back, unfortunately.
I am anxious to find out about that test that tells me if Lupus could have caused my heart attack and bypass.
I know it's difficult to communicate with doctors, especially in these early stages. But you MUST get proactive and assertive. It's the only way you'll get better. The more you learn, the easier it'll be to get what you want and need from your doctors. I have found that if I can talk like doc, I
That will take some practice Ginny for me. I can do it, I just have to memorize some things, and listen to all of you, and I will get educated. but just the education itself will not find me talking assertively to doctors. I have to figure out what is humility and what is asserting one's rights. It is a traditional thing. Cherokee people are not supposed to sound like they are bragging, humility is the path to walk. but sometimes, like now, I have to learn to be assertive so that I can get some of my energy and strength.
get much better care and faster treatment. Plus, it takes the fear and unpredictable nature out of living with this disease. Like the saying goes, "Knowledge is power". It's very true! Always write down what you need from your doctor's visits. Then you'll never leave without the things you need.
I can do this. I can write down what I need for the doctor to do for me when I see him. that isn't bragging it is asking a doctor for help, and that is his purpose as a doctor to give us what we need, if he/she can.
Gain wisdom about your body and how it works. Just in general. If you know how the body works, how the organs work together, etc, it really makes understanding any illness easier and less stressful. I'd encourage you to get a current book about the human body. Sort of become a med student!! LOL. When you have knowledge and wisdom, there is no room for fear. Or, less room for it anyway!
I don't think you'll be waiting years to get this diagnosis Hester. I'm encouraged for you and hopeful that you are on a very fast track here.
Lots of love
Thank you Ginny so much for your advice and perseverence in showing me the path that can take me to a better and safer place.
And thanks again Rosie for telling me about
this post from Ginny.