Dr Virginia Steen

Has anyone in this group everr gone to Doctor Virginia Steen. She is at Georgetown Hospital and is suppose to be the Scleroderma Guru. I have an appointment with her in May

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Hi Cicchesi ... Dr. Steen is my specialist and she is wonderful and truly a guru on Scleroderma. I feel so blessed to finally go to a dr. who could not only tell me what the heck was wrong, she also knows what to do to help.

Dr. Steen is also very compassionate and takes the time to listen to her patients. On my first appt. I saw one of the Rhumy Fellow's to get a full history of my symptoms, previous workups, etc., and then I saw Dr. Steen, so they are pretty thorough.

I was in pretty bad shape when I first saw Dr. Steen early February, but I am now doing better. I am due to she her tomorrow because I have a follow-up appt.

Best of luck and many blessings... you will like her!

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Jasmine, Thanks for taking the time to reply. I feel very fortunate to be able to meet her. I live in FL but my niece is a nurse at Georgetown so she arranged it for me. I am actually feeling ok right now, but I want to see what her plan of attack will be. I will keep you posted. Thanks again Lisa

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Where in Florida are you- we are in Tamarac

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I wouldn't mind traveling to anywhere to see a good doc. I'll be looking forward to your post after you've seen her. I'm in FL too Julia...near West Palm Beach. Hope everyone is having a good day or at least trying too :-)

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I am in Cape Coral, which is on the West coast almost directly across the state from you. I will let you know my thoughts when I get back. I must say I feel 100% better than I did prior to moving to FL. We moved here 8 yrs ago from CT because of this disease. I was very sick when we moved here. I have had 2 additional partial amputations since living down here. The raynauds is extremely brutal on me.

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Hello everyone! I was actually diagnosed by Dr. Steen back in Feb 08 and she immediately put me medication regimen that I'm still on today. I believe she saved my life and my Systemic Sclerosis is now stable though I still have frequent Raynaud attacks. As everyone else has stated, she is a wonderful doctor, easy to talk to AND is a Scleroderma expert. Can't get any better than that! It's a good thing you have a connection at Georgetown and make sure you bring all your previous lab, x-rays, PFTs, echos, clinical notes....anything that will help her with your medical history. Good luck to ya and I can't wait to hear how your appointment went. God Bless you!

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Hi I first saw Dr. Steen in the early 90's when she was in Pittsburg. I was amazed that finally I had someone who listened and knew what I was trying to say. I was very sick then and she started me on several meds and sent me to a great GI Dr Zawaki at U of Mass. I started getting better within weeks. Thru the years I have seen her some but my present Rhuemy is contact with her regularly. He even use to play bridge with her Mom when she was still alive. Also you can send her email and she will answer right away sometimes the same day. I have emailed her many times with med questions or was just at my wits end and she was always helpful. Good luck and I hope you like her as much as I do. By the way I live in southwest VA just 13 miles from TN.

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I am getting more excited everyday closer to my appointment date. I am so glad all of you like Doc Steen so much. I have already sent her my various labs, echos, IV antibiotic treatments and so forth. Hopefully she will have enough to get started with me. I am up there the day before and the day after in case she wants to send me for more lab work. Thanks for the well wishes.

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Cucchesi...you can count on the "more" lab work...LOL No problem though, the lab is on the 1st floor of the same building.

I just can't say enough good things about Dr. Steen. I was there yesterday and had a "melt-down" in her office! This disease is truly frustrating at times, but Dr. Steen has a way about her that is very calming, encouraging and reassuring. Even though I still have a ways to go, I am sooo much better thanks to Dr. Steen.

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I was on Pine Island, near Cape Coral this winter. Now I'm back in MN. I've been diagnosed for 10 yrs. now & have been through a lot with this disease. We may have to meet next time I'm on the Island!

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I have been reading these posts daily since my daughter was dx 14 mths ago. She is in Tallahassee and i am in Jacksonville. We travel every 4 mths to Georgetown to see Dr. Steen. We feel very blessed to have found her. We even traveled to another sclero clinic but made the decision to stay with Dr. Steen. She is a wonderful doc. I will tell you labs are ordered and not an emergency you're insurance probably won't cover them so have them done at you're regular clinic. I want to make our trips to DC about more than just a medical appt so we do things like touring the city at night to see the holiday lights and going to the museums. You may want to consider that. Good luck and everyone on this site are in my prayers daily.

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Kbikegirl we should absolutely get together next time you are on Pine Island. Hope it's not too cold in MN. Things should start warming up by now!

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Jasmine thanks for the info about the labs. I asked my brother if he knew where they would send me and he said he doesn't even know where his own doctor does labs. LOL. Just like a man. Thank God my niece who arranged everything is more like her AUNT hahah

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crvallely, I can't believe to make the trek every 4 months. Doc Steen must be wonderful as everyone has already stated. Thanks for the info about the labs also, I wouldn't have thought about that. I am actually excited about this trip. As you said you try to make it more than a medical visit, I will have an excuse to see my family more. Thank you everyone for all the input. It's nice to see people on this site trying to help one another. God Bless EVERYONE......

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Hi, stillbeautiful,
I'm curious as to what medications you are taking.

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Would you mind sharing the contact info for this doctor? How long is the waiting list?

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gonnabeatit, this is Dr. Steen's info!

Virginia Steen, M.D.
Professor, Director, Rheumatology Fellowship Program

Georgetown University Hospital Rheumatology, Immunology and Allergy Division
3800 Reservoir Rd, NW
Kober Cogan Bldg., Lower Level
Washington, DC 20007
Phone (202) 444-6200

Special Interests
# Evaluation and treatment of scleroderma
# Systemic lupus erythematosis
# Myositis and undifferentiated CTD
# Lung disease in connective tissue disease

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Hi Cicchesi,
You've already received many positive replies, so mine may seem redundant. I have been seeing Dr. Steen since she confirmed my Scleroderma diagnosis in August 2009. I am currently on a clinical trial through Georgetown for Pulmonary Fibrosis in Scleroderma patients.

I would echo the comments already made. Dr. Steen is very knowledgeable and a good listener. I am thankful to have found her and to be receiving medical treatment under her supervision.
GeekGirl

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Hey Geekgirl! I am too sounding redundant but I am soooo excited to be going up there I can't say it enough. I am less than thrilled with the doctors down here. I don't know what I am looking for, but it seems no one has a plan of attack. Just taking it one day at a time and not anything preventative so it doesn't get worse. Maybe I am dreaming but I guess I am looking for someone more aggresive. I hope I have found that in Doctor Steen....

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Gonnabeatit, to add to the reply you already got, My niece was down in FL at Xmas. We discussed me going up therr to see Doctor Steen then. She Is a Nurse there so she first Called Doc Steens and explained what was going on with me. They then requested to see my last 4 visits with all the doc's I see down here. After that I got the news in April that she was ready to see me. So the whole process took a couple months. Hope that helps

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