Lupus Support Group

I promised an update on my visit to the Duke Lupus Clinic, I wish I had more information to share right now… My lab work (9 vials of antibody and blood testing) will be filtering in online (like the system they use at April’s Cleveland Clinic) over the next 2 weeks. Your labs are read by your Dr., notes are made and then you can view them on the net. They also call you to discuss your lab work and they see their patients every 3 months. Wow, a big difference from my current Rheumy who still does things the ancient way and prefers to prescribe over the phone as opposed to actually seeing me if he’s busy! He was going to recommend me for Benlysta Infusions without updated lab work (YIKES).

The Duke Clinic is AMAZING. It’s the largest in the Southeastern US of its kind. They are extremely thorough, knowledgeable and professional. My Dr. is Megan Crowse (you can read her credentials online http://www.dukehealth.org/locations/duke_lupus_clinic/) and she is very friendly and down to Earth. I was there for two hours and never felt rushed. I would HIGHLY recommend her and the Duke Clinic to anyone. She, like most Rheumatologists, likes to wait for the lab results to come in before she comes to any conclusions or suggests other testing. She asked me lots of questions and seemed to be going down a “certain path” in her mind but that remains to be shared.

The one thing I forgot to ask her is the all important seeing white spots when I am overheated or have been bending over! I can’t believe I am so scatter brained that I forgot to ask this question. There are a lot of things that she MAY do depending on my labs, some meds that she dropped (yay) right away and suggestions that she had but nothing definitive. I will let you all know as information becomes available to me. Thank you all for being there for me and such a wonderful online “family”. ((HUGS)) ~ Julie

I was really happy to hear that you felt this was a positive appt. It feels so much nicer than going to see a doctor that really doesn't do his homework and seems to be lost about what treatments and tests should be done. I am glad she took her time with you. So when do you go for follow up? Is it three months or when she gets your labs back?

April

I have an appointment already set for 3 months out but she said she would call me to discuss my labs. She said if they needed further testing that It would be sooner than the 3 months. I actually felt like it was money well spent going there! That is hard to say these days ;0

Julie....that sounds wonderful to me....at least they are getting to the bottom of all of this. I know my daughter is having many problems and we finally found a Neurologist who is willing to do testing on her.....she is going to a clinic that seems wonderful....I wish you all the best.

Hugs,

Eva

Thanks Eva. You are so sweet. I wish your daughter well and am glad she will be getting testing. I am ready for results but time seems to come to a GRINDING HALT when it comes to lab results It seems like it has been days and days and it has only been 2. UGH, lol.

Julie....I know what it's like to wait for lab results and other tests results....it's a waiting game and hard to play. I will be praying for you that you will get them back soon and please keep us updated as we all care very much for you gal.

Eva

Julie,

So glad to hear you found someone you feel comfortable with your new Rheumatologist and it sounds like they are moving along. It is not much fun waiting on labs but I know it is best for them to wait for them to come in. Sometimes labs don't tell the whole story but she seems in tune with what is going on with you. That must be comforting. Good luck and take care.

Annette