[kjoyinri]

Hello everyone, I just got back from my Rhumy dr. I was sent to her after my primary dr ran a bunch of tests and then wanted the rhumy dr to explain the results to me.. She said I have 3 of the criteria for lupus but did not want to diagnose until I have 4. The impression she gave me is that I do have lupus but not severly yet. She said when I get one more sign she will start me on plaquinil.. My blood work showed a high ANA and SED rate, The lupus profile showed Smith Antibodies high, Anti-histone ABS high and Anti-DNA high. I am not sure what all those mean, but she is running a urine test for protein, a CBC test and she ordered x-rays of my hands and feet. She also said I had fibromyalgia.. not to sure what that is all about... So do you think I have lupus? And if so, is there anything I can do on my own to slow the progress? She said my organs don't seem to be involved yet and I would rather it stayed that way! Any insight would be appreciated...

Kathy

 

[kjoyinri]

Thanks for all your replies

All of you are very helpful and I appreciate it so much. This whole thing started 8 years ago when I went to an orthopedic surgeon because my fingers were always hurting and swollen. That is when the first ANA came up high, he sent me to a Rhumey who told me I had Osteo and gave me celebrex which didn't help much. Next dr I saw said I had RA and sent me to a Rhumy who said I had osteo and pretty much patted me on the head and made me feel like a hyperchondriac.. At that point my primary dx me with MCTD because he said something was happening he just didn't know what. He has been running blood work yearly and this last march decided to do the lupus panel then sent me to another Rhumy. I do have to say, this dr was really nice. She didn't make me feel like I was crying wolf like the others did. She actually did a full exam, which the others didn't and asked lots of questions. She also feels my fingers and toes are osteo because they involve only the top joints. But took x-rays. As to photosensitivity, I work third shift and seldom see the sun. So I don't know. She says if I get a rash, swollen joints other than the top ones, pain in my chest or sores in my mouth to contact her immediately and she also said if the CBC comes back low something about a compliment???? Then she will start treatment. I think she really took me seriously and wants me to call in two weeks for the lab results so will go from there. She said it usually takes 10 years from the first high ANA until lupus is actually dx'ed I think half the problem is that I don't know what symptoms are caused from lupus and what could be related to my diabetes, high blood pressure or GERD. But I think I am on the right track now with this dr. Sorry for the long post, I will try to make it shorter in the future lol... Thanks again.

 

[kjoyinri]

Actually the dr who has been with me so long is my GP. And he is awesome. This was my first visit to this Rhumy but she seems pretty awesome as well. First Rhumy to take me seriously and not just brush me off. I feel pretty torn here, as I want to have a dx because I want to be treated, but I don't want to have a dx because I don't want lupus, does that make any sense? I was actually relieved with the blood work showing something going on because I feel like a hypochondriac with all my complaints. Just to get validated that I am not just imagining things ya know? Anyway, thanks so much for your response. It's nice to not feel alone in this.