I'm looking for a doc to manage my Behcets.

[spirojo]

I'm in the Phx/Scottdale/Glendale Arizona area. The past 2 rheumos I've had dismiss my symptoms as inconvience, I believe, because I have very little joint involvement. I am hoping to find someone experienced with Behcet's patients and not necessarily a rheumo.

[Hidden]

Hi, have you been in touch with the American BD Society? They may be able to help you.

Not having joint involvement doesn't exclude BD. If you haven't already done so have a look at this Society's pages, you can find diagnostic criteria, factsheets and all sorts of things that may help with a diagnosis. While you are waiting for a referral to a recommended specialist, if you don't already do so, keep a record of symptoms and take photos if you can. Most of us find this useful, especially those who are not yet diagnosed, as the symptoms presenting at the appointment may not be representative of how you are on a bad day, Sometimes we have to educate our docs!

[spirojo in reply to Hidden]

I've been diagnosed since 1982. I'm just looking for a doctor who will not be dismissive because my Behcet's isn't as severe as others. I've looked at the American Behcet's Disease Associations doctor registry and there is not 1 doctor listed within 100 miles of my zip code.

[Zebra]

contact Sandra McElgunn, President of ABDA. Sandy will help. Also if you are on FB, ask this in some of the many groups as there are lots of Americans there. X

[Hidden]

When you've explored your options, if you still can't find someone within 100 miles, is it worth it, or at all possible, for you to travel that distance? It may be worth it to see an Expert as you may then be able to get the treatment you need locally. I saw about 5 local docs I wasn't happy with over a period of several years, then with advice from the Society I requested referral to a Specialist just under 100 miles away from me. She referred me to another Specialist and I saw them both. My first few visits, although exhausting and expensive, were well worth it. With a firm diagnosis, (ie two of the top Specialists in the country believed me) management and treatment plan I had something to back me up when seeing any other docs, if needed.

These Specialists liaised with local docs and my GP and wrote some letters for me to carry round with me.

Then I was able to see docs closer to home and they could contact my main Specialists for advice. I can also contact my Specialists myself.

We agreed I would see my Main Specialists about 3 times a year, more if necessary, less if not needed. I cancelled my October and January appointments after email consultation as we mutually agreed it wasn't necessary on those occasions.

Meanwhile, I am under the care of a multi-disiplinary team at my local hospital, built up gradually over the years as one Specialist recommended another and so on.

Good luck

[kcalla]

We travel to NYC to see the best, dr. Yazici at NYU medical center in manhattan. His father is a specialist in turkey and he is very knowledgeable and very encouraging. My daughter is also in a minor early stage but we are not fooling around and wasting time! The sooner the treatment the better, he has Behcet's patients from all over the country, he is worth the trip. If you decide to go, let me know and I will give you travel tips, he is really very accessible and NYC really is not too difficult to navigate. I would make the trip at least for a second opinion and ask him to lay out a plan for you. Make sure you have at least a 30 minute appt scheduled. Get lab work ahead of time, just email him and he will write back with what you need to bring for results to make it easier and quicker. Bring a list of questions and tape your entire visit so you can listen over and over and play for any home MD's if they are willing to listen. He is very quick and to the point so you need to be ready with specific questions. You can then keep in touch by email, he always responds. Best of luck!