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Life With Lupus

Washington University Rheumatology Wait Time


#1

Has anybody seen the physicians at Washington University Rheumatology, and if so, how long did you wait to be seen? I just went to my PCP Friday and she wants me seen ASAP by rheumatology, as I was running a low grade fever and exhibiting flare symptoms. I contacted Washington U Rheumatology, and every time I asked if a doctor was accepting new patients, the receptionist stated "no" (it's hard to get in there as a patient from what I hear). I finally just broke down, explained my situation(nearly in tears), and she said she was going to fax over a referral packet today to my PCP and it would be reviewed so that I can get the next available appointment. I wasn't expecting that kind of response and seriously was just venting, but I think when she heard SLE and my particular dilemma with not being a standard case, it made a difference.


#2

When I first started exhibiting lupus symptoms, no one knew what to do. I was sent to a variety of specialists (neuro, gastro) which I got into quickly, but when I called to make an appt with a rheumatologist I was given an 8 month wait time for a new patient appointment. I thought, there’s no way I can wait that long – but I really wanted a good rheumatologist, so I made that appt and called, literally, every other rheumatologist in St. Louis covered by insurance --about 15-20 other people. They all had a similar wait time, even the people who had really bad reviews online. At one point, about 5 months in to my 8 month wait, I got extremely sick and had what the Wash U docs called one of the most prominent facial butterfly rashes they had ever seen. I had just been to my Wash U gastro, and I emailed him a picture of my face, panicked. He made some calls to Dr. Parks in rheumatology at Wash U and Dr. Anandkat in dermatology and asked if they could see me right away, and thanks to his phone call and picture of my face that he emailed to them, they moved my appointment up to that same week.

The wait time for rheumys in St. Louis for new pt appts is ridiculous and borderline irresponsible since lupus is such a serious illness, and most the time primarys don’t know how to treat it.

I really, really like Dr. Parks, she is amazingly thorough and compassionate. Maybe if you call in and ask for her nurse, Robin, and tell her what is going on, you could ask if they could work you in any sooner?

I also saw dr. Kathryn coulson at slucare, who I also really liked, for a second opinion. I had a serious problem with SLU policies, though, of refusing to release copies of my medical test results until the doctor personally met with me to go over them. Patients with serious medical conditions. At Wash U, if you sign up for the Follow my health, and get your blood tests drawn at Barnes, they will show up online in a matter of days, which is very nice for tracking your medical history over a matter of time.


#3

Also, dr. Parks sees patients at both west county and the center for advanced medicine. If you are flexible to which location to go to, one might be quicker to get into than the other, at least that has been my experience.


#4

Thanks wonderfulworld for all of the input! I agree with you on the ridiculousness of wait times, for sure. I've had two family members with SLE and major organ involvement...it's nothing to play around with.

Once I got the paperwork for the referral over to them, they actually scheduled me in three weeks time, so my appointment is actually next week with Dr.Sen. I guess because of my clotting risk and periodic creatinine elevation, I'm considered higher risk so they fit me in. It couldn't have come at a better time too! I've really declined over the past few months and am hardly able to function.

I'm excited and nervous, but oh sooo ready to feel my age again.

I hope all is well with you!


#5

I am considering moving up to Seattle area. So i am curious about how have you both liked your doctors? did you like Dr Sen?

I am type of person who likes to be treated as partner, not spoken to as parent to child tone. I have had SLE/RA and other autoimmune diseases since late 1970's. SO have had it a while. I just do not want to go through a ton of tests at this age in my life (60) so the new doctor can diagnose me which two other doctors have done when i moved.

I know at USF, Calif takes new patients but they are almost as far away as Seattle is from here. I have read many positive things about the work Doctors are doing on autoimmune diseases up in Seattle at the university and other places. They seem to work together which is good.

I knew there was fibro clinic in Redmond area but have not heard of SLE one? Has anyone tried either ? Are they good? do you think you get better, top of line doctors and treatment?

thanks for any help you can pass on to me!