Specialists in the US?

[e-m-5777]

Anybody know of any specialists in the US????

[belle623]

Yes Seattle Rheumatology Dr. Mease

[Stubby_10_toes in reply to belle623]

Really!?! A specialist in Seattle? Although I live down in southwest Washington,, it's not too awful far. Can you give me any details about where this doctor is located and what kind of treatments he or she is doing? Thanks, Carol

[belle623 in reply to Stubby_10_toes]

Hi Stubby

Yes!! Dr. Mease @ Seattle Rheumatology. He is his own practice that rents space at Swedish. So he has freedom to try anything. And he is aleays on the frontier of BD. He os friends and colleagues with the Yazici's (World renowed BD docs) he attends BD confrenses though out the year.

I currently am on Kineret, Methylpred and Imuran. He is very good at personalizing treatment. His PA Chrisy is amazing as well. They are very personal. You are treated as a human... imagine that!

I hope this helped

Ash

[Jenn_USA]

Dr Yacizi at NYU in NYC is no longer taking new patients. Patients are being referred to his partner, Brian Golden, MD, also at NYU in NYC. I really liked Dr Golden when I met with him. He was VERY thorough. If you cannot get to New York City they will consult with whatever Rheumatologist you find local to you. In Southern NJ I'd recommend Arielle Silver, MD at Arthritis, Rheumatic & Back Disease Associates.

[rooser1]

Where are you? Best thing you can do is find a rhuematologist, call the office and ask if the Dr has experience with BD patients. I see one that does, and I see my Gyno who doesnt and she calls me "her first one." I had printed literature (aka anything that says what BD is, the symptoms, yada yada yada... which is google accessible- also from ABDA).

Either way, a good dr will be open to trying things and will research things for you. We are a rarity- so be your best advocate, research things for yourself- and do not be afraid to say NO- you know your body-.

Keep us posted!

PS also USA here- baltimore md

[e-m-5777 in reply to rooser1]

I'm a college student so between Maine and Massachusetts normally. But definitely willing to travel to meet with someone who actually knows what's going on with me

[rooser1 in reply to e-m-5777]

Find someone in the nearest city and just ask if they know about BD. Because you may have to travel back and forth more than you realize. How it worked for me was- i saw about 18 diff drs between urgent care facilities and then finally my Rhuem. Keep bringing up BD. Basically youll test negative for everything. I had symptoms all through college but didnt know it was BD. College is tough, keep up on sleep. Thats what saved me.

[Megz3377 in reply to e-m-5777]

I highly recommend Dr. Sandeep Varma in Norwich CT.... It's a little over an hour ride from Boston. I also see Dr Yazici in NYC but as mentioned before he is no longer taking new patients. Dr. Varma in CT has saved my life! He is insanely BD knowledgeable and has the best bedside manner. Cannot recommend enough. He is at Backus Rheumatology.

[Netsbets2016]

What state are you in ?

[e-m-5777 in reply to Netsbets2016]

Maine/Massachusetts

[Stubby_10_toes in reply to Netsbets2016]

I live in Washington state and I'm not the original inquirer but would surly like to know . I have not been to a doctor in several years for this. Just suffering ,

[Netsbets2016]

I live in ct , I see Dr Danve rheumatologist at Yale, old Saybrook office. Not to far from you. He listens and has helped me

[NerdyChristina]

If your symptoms are relatively manageable, any rheumatologist you like can be wonderful. I ran out of doctors because my class got really complex, and I did end up at NYU, but only for one appointment to create a treatment plan. My best advice is to get someone who is going to work with all the specialists you will need. I got backed into a corner where neurology wouldn't see me unless I saw rheumatology at their hospital in CA, but wait lists were super long and I was seriously ill. (Spent 9 days in the hospital and couldn't walk without a walker for months.)

Ultimately whatever your serious symptoms are, it's THAT specialist that you'll see the most, and they'll coordinate with your rheumatologist. For me that means I really need an open minded and kind neurologist, and a rheumatologist who is willing to put herself out there and ask other doctors what the options are for my limits.

I see my rheumatologist less often than other specialists, but she's the captain of the ship haha.

[Pvancourt]

Where do you live in the U.S?

I'm in Oregon and found a Rhuemy that has an interest in Behcets, but I wouldn't call her a specialist. Let me know if you want her name.

[Lovingdragonflies in reply to Pvancourt]

Hi. Was just looking through and saw your post. Who do you see? I’m in Redmond..

[duke22]

Dr. David McLain Birmingham alabama

[Reikichan]

Go to a university hospital. You will get the most up to date care and u will be seen by the attending and the resident. The resident then follows u and you have better access to get questions answered and prescriptions. I go to the Rheumatology clinic at univ of Virginia. I am sure you cld get good care in Boston. Good luck!

[Stubby_10_toes]

I wonder if the UDub. University of Washington would have an interest in Behcets.

[Frustrated2 in reply to Stubby_10_toes]

Hi I’m in Washington State, Did you find someone at UW that knows about Bechet’s??

I need someone and have a referral that was sent there by my Neurologist..