UTI and flank pain, want some in sight.

lcasnyder · Posted: Tue Jul 15, 2008 6:08 am Post subject:

Thanks laurid8967.
My primary physician knows that I have stopped I talk to her today. She and I are looking into something different and even a different Rheum. I just don't feel like he hears me when I talk. I am trying to explain things to him and he is just worried about writting his notes and getting me out the door. I just don't feel like he is doing everything he can or could nor is he putting the effort or sincerity into the appt. when I go.

laurid8967 · Posted: Tue Jul 15, 2008 11:51 am Post subject:

Good for you, lc -
Unfortuanltely, there are some lousy rheumatologists out there...I dont understand it, really, why did they go into this field if they dont know anything about this stuff? At least your primary knows the deal...
I hope you find something soon that helps your lupus and doesnt make you ill...We dont have many choices, do we? There has not been any approved new meds for lupus in 20 years according to the LFA, ALR and more...That is UNACCEPTABLE!!!
Good luck to you, and keep us posted, OK?
Lauri
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

lcasnyder · Posted: Thu Jul 17, 2008 11:53 am Post subject: Here is what I know...

Okay guys here is what I know. I went for an appt. with primary physician today. Also saw my labs from the ER visit that weren't back yet. My lupus isn't quite like the Rheum. thought when I saw him. My C3, C4, and ds dna are all high. I also have mesenteric adenitis. The primary dr. was irritated when I told her that the Rheum. sent me to the ER and said that my Lupus was quiet and the ER doctor tells me that she thinks it is all Lupus related. She is also upset that they didn't try to find out why I have mesenteric adenitis. She said there is a cause and they should have ruled out if it is being caused by the lupus or not. She also complemented me on the fact that I had stopped the Placquenil. Especially since stopping I don't have the awful headaches I was experiencing, the abdominal bloating and cramping, my blood sugars have actually regulated now, and my head just seems clearer. She said I am just on of those people who can't take it.
We discussed a different Rheum. today and she is setting me up with one affiliated with Hershey Hospital if any of you live in PA. Her and I both agree that maybe with it being a teaching hospital and the younger doctors just coming in might be more insightful and willing to look into things more and give me more help and far as my lupus goes. She agrees that I need to see the new Rheum. as soon as possible so we can try and find something else to do for me to control the lupus. She is being really aggressive again, which I love because she listens. She is also sending my for an MRI of my brain and spine. She is curious about Cerebral Lupus. Just because of different symptoms and things that have been going on, put up a flag for her. She is very straight forward and persistent. I am at least in good hands with her.
My ? is do any of you have cerebral lupus or have mesenteric adenitis? Has anyone else had problems with the placquenil?
Thanks to all. Linda