Ok I have needed a rheumy dr since 2009 but due to the loss of my medical insurance we could not afford it. But this last year has been rough on me and I went into serious flares at the begenning of summer. My regular dr that I was going to would not do any test that we felt she needed to do because we didn't have insurance, But we had to change doctors and I had to start going to a clinic, which was finally able to get me to the right place and do the right kind of testing. It all started about a month ago when we knew we were finally getting somewhere. The ANA test was postitive, for the anitthroglobulin antibody, and also showed that something was attacking my joints at a very high level. I have been put on prednisone 60 mg a day for the last month. The dr says they want to shook my system. They set me up with the appointment for the rheumy dr at the musculoskeltal institute, I go to the first appointment on the 6th. I want to be prepared when I go, I want to know what To ask and how to ask it.
I hear people talking about the results of blood test, especially the ana test. I have treid to find some information about such test and how to understand them but can not find anything that makes since to me. "Anitthroglobulin antibody" What ??? Anybody understand that word... and the ANA test what numbers do they go by and what numbers show as positive or negative??? and what should the numbers be???
Now when I go to the rheumy dr I feel like I should ask questions, I am not sure where to start and who to explain what I want to know..My regular dr who did the ana test said that if I had any questions he would gladly answer them or talk to my husband if I needed to, but the day that he told me I just wanted to leave the office and go home, I have known for years that they were going to tell me that I had lupus, but actually hearing it was a diffferent feeling. There is no one in my family that has been dignosed with lupus but I feel that my mother has it and her sister has type of autoimmue disorder, I mean when they said you have lupus it all made since to me I all came together.
Right now I think the doctors are getting together for a treatment plan, so far I take a long list of meds and the prednisone is the newest. The doctor states since I am on a high dosage that I should not go out much and stay home. I hate that part and understand that prednisone attacks your immune system, so being around other people may not be a good idea. Do other people have to go through this? The dr says that once we get my immue system down some, they will reduce the prednisone down to a low dose. My Aunt takes a low does of it and has been on it for years, she was surprised that I was on such I levels. I know that there is some newer drugs out there for lupus and was wondering if any one was on them? I also understand that taking my medication is important but it seems like if the medicaition makes people feel worse then why take it? not that I would not take it, just a thought... This is just a lot to jump into even though I have been battleing this most of my life and especailly the last 7 to eight years now.
My dad does understand why I have it thinking that I am still to young to have it, I am not but 42 years old and tried to explaine it the way it was explained to me. Mine was dorment for a very long time and due to stress levels in my body from losing my son 13 years ago when he was only six brought everything out in the open before it was ready to show up. Stress is a B*tch. But with knowing what I know now it has opended my eyes to what My mom and my kids have been dealing with, I feel I am lucky I have not had much of the rash and the rash that I did have was not even on my face. Even though I did have a large rash on my neck and chest and back for several years and what concers me is the fact that my oldest son sam who will be 21 in Oct also had the same rash in the same places. It scares me that he could possibley start showing other signs as well.
Sorry this is so long but I am trying toget all the information I can right now to help the doctors and to talk them better when I go to see them in sept. and to also educate my family as well..
Lupus dignosed 8/8/2011
diabetes, raynaudes,IBS asthma, Sleep apena, arthritis. ect