Hi there I have a few questions regarding testing results and symptoms. I read that there is 11 criteria most rheumatologists go by and right now I have at least 5 of them with one being a positive ana showing homogeneous pattern. I went to my rheumatologist yesterday filled with emotions only to get a clear cut answer "you don't have lupus due to your other labs being in normal range" I wasn't sure what to think. Despite everything pointing to lupus, I was partly relieved but partly frustrated I may not be getting properly diagnosed. He wanted to treat me with plaquenil and avoid the sun yet said I may have been one of the healthy ones with a positive ana and only time will tell. As I repeated my past symptoms coughing up blood, pleurisy, protein in urine, nasal ulcers, low grade fevers, anemia.. I was in a bit of a shock as to why he was treating me like I had lupus but would not diagnose me. If he thought I even had it mild why would this be the case and him not tell me? Should I get a second opinion..I just feel so confused and this is the worst I have ever felt physically. He made it seem like due to me not having joint pain the butterfly rash or other positive labs other than ana was a definite NO. But I don't want to be treated for something he is insisting I don't have. Has anyone ever had this happen where they are unable to get a diagnosis but their doctor want to treat them as if they had it?
Your story is not an uncommon one. It can take many years to get diagnosed with Lupus. You need to show clinical evidence along with symptoms. Many times if a Rheumy suspects Lupus he will watch you until he can make that diagnoses. I know it is frustrating when you want answers to why you are feeling the way you are. When I had finally got very ill and I was not diagnosed yet I was told by my neurologist that the rheumy would start treating me. I asked if he would put a name to what I had and her reply was "you do not want it named, because once it is named everyone stops looking. You only need a name to know how to treat something and we are going to try a treatment." It was very enlightening to see this from a docs view point and it became very clear. I had seen 5 different rheumies and 3 different neuros in 15 years before I received a diagnoses. I had a positive ana all that time with titer counts as high as 2000. I know it's difficult but hang in there and persist. If your doc is willing to treat you, try it and see if it helps. If it does that might help to confirm a diagnoses. Ton of hugs.
Hi Noel, just wanted to let you know I have been there too. I guess it's your comfort level if your okay just starting the Plaquenil and seeing if you feel better. That's atleast a great start. I know how distressing it is to not have a name though to atleast validate how you feel.