Your Tips on How to Get Off to the Best Start with a New Specialist

Yes there is a national rare disorder support group. It’s called mpssociety.org
Very very helpful.

I have some points for the provider: take the new patient on time; don't interrupt when she's talking; make sure your receptionist greets the new patient promptly and smiles; tell the patient how to get in touch with you: phone, patient portal, FAX, never? This will help the patient know she made a good choice.

@heartbreaker So many good points! Some doctors are so frustrating, taking forever getting back to portal messages, etc. I plan to mention this to my PCP in October when I have an appointment. My doctors at MGH always respond promptly, but I can wait a week, even more, to hear back from my PCP.
JK

Meningioma, cavernoma,Leukocytoclastic Vasculitis and more!! Amtraking up and back. Want to meet and chat???

I want to thank you all for the tips and guidance! I fly in to MN on Tues. Just have to call for shuttle arrangements could'nt decide between the two from the airport to Mayo. Stayinv at and Bed and Breakfast since I am traveling alone...still nervous. But, that is what has to happen. My hubby is with my kids. Thanks again!

I know I’ve seen lists before but, of course, I can’t find them now. It’s me, not you!! I’m traveling to Mayo in Rochester next month via Amtrak, have reservations at the Kahler across from Mayo, and am getting organized for my appointments. I have a meningioma, a cavernoma, Leukocytoclastic Vasculitis, and other nice stuff. Want to be as efficient as possible to get the most from the appointments. I’m going to ask about how one might relate to the other, course of action, drugs? Diet? Genetics involved? I’d appreciate your help with my list of questions. Anything at all to learn from them as much as possible. Thanks, all!!

Hi @ees1 you may have noticed I moved your post to this existing discussion that I believe you are referring to. Simply click VIEW & REPLY in your email notification to get to your post.

I'd like to tag @auntieoakley and @debbraw as they may be able to get things started in give you tips for your visit and questions to ask your specialist.

Back to you @ees1 did the department you are seeing give you any suggestions?

Thanks for the tag, Ethan McConkey. I would write down any and all questions I think of regarding all of these issues and how they relate to each other. Many of these may be answered before you ask, but those that aren’t, your doctor will take the time you need to ask. Be prepared to have whatever tests you need while you are there, they will give you an itinerary when you check in. I don’t know the particulars of your health, but in a complex medical issue there is always plenty of questions. You may ask any one at any of your appointments questions regarding that test or scan etc. Finally, when the recommendations are made, you get to help make decisions for your care. I also asked for any possible recommendations for doctors in area, and sure enough there was a great doctor a couple hours away who worked with Mayo coordinating care. I would never accept a doctor who was unwilling to coordinate with others again, after witnessing it first hand. This is where patients become more important than medical politics. I wish you the best, and please keep us posted during or after your visit. If you have any more questions please feel free to ask me, I will answer if I am able.

@anuntieoakley, This is very thoughtful. I was especially shocked by the fact that there are doctors who are unwilling to coordinate with others. My first experience with that kind of behavior was when the local surgeon said, if you choose Mayo, don't come to me for aftercare, I don't want to have to clean up someone else's mess. Hmmmmmmm...............

@artscaping Obviously a very insecure doctor. Glad you got rid of him.
JK