Those With Experience Moving

[Ernie]

Hi,

I need to move next year and I am worried about finding a new team of doctors. I will be 3 hours away from where I am now.

Those of you who moved since you were diagnosed with POTS, did you manage to find another good specialist(s)?

Or did you have to train another specialist to treat you? I went to see 60 specialists in Montreal to find 6 good ones (in different specialties). I hope I won't have to see as many in my new hometown to find a good one.

Any experiences, please share!

[ajw4790]

My best luck was once I went to a large university hospital system with a reputable med school/system and started to see some of the newer drs. that were not as set in their ways and had an open mind, on top of the good education. This doesn't go for all universities though b/c I went to many drs. affiliated with another close by university and that was not beneficial at all.

Other than that see if you can find someone else in that same area that knows good drs. This university system, I have been told has even had POTS patients in rounds and educated the residents, so in other words they seem well educated in it. Even though they described to the residents they would likely never see another case. Which we all know is not absolutely true.

I wish you luck! If it is Ohio I could give you pointers, but elsewhere I don't have much info.

[Mrs. Burschman]

You might also ask your current doctors (any ones you like, that is!) if they know of anyone in your new location. Maybe they know of someone or could do some checking for you.

Good luck! Moving is not fun!

Amy

[Ernie]

Hi,

I followed your advice and called a hospital, talked to a nurse and she referred me to a EP who is about 40 years old and doing research on syncope and also interested on genetic. When I told her that many of my family is affected with it she was even more interested. She also gave cues on how to proceed to move and get doctors in the new cities without having to wait years. My niece has been on the waiting list for 3 years now. I might bypass the waiting list and start seeing the EP in a couple of months! I feel so lucky! I just need a referral from my GP which I will be seeing this afternoon with my niece.

Wow, things are moving fast.

[morgan617]

Good luck with your move Ernie, you never know, you may get better doctors moving where you are! That will be my hope for you! I've lived here for 24 years and can't ever see us moving, so can't really help you. But wish you luck on your journey. Ugh, moving is no fun. morgan

[Rachel]

Wow, that's great that you've already gotten a recommendation for a specialist! I hope this EP is a wonderful doctor for you and that you'll be able to get in to see him when you need to.

Good luck as you go through the process of finding a new team of doctors. It sounds like you have a good start.

Rachel

[cmtaylor5]

Hi,

I've moved 11 times in 22 years of marriage, so this is something I deal with all the time. I agree that asking a doctor you trust if they "know of anybody" in your new area is a good idea. Only once has this worked for me, though. What I usually do is start by trying to find a good internist. I ask everybody I meet. I don't tell them my life story or anything, but I just say I'm new in town and I want to know who "the best" is. I think nurses are great resources, and if I encounter doctors in my social circle, I'm never shy about asking them who they would recommend for a family member for my health problem. After a while, you start to hear the same names. I most recently moved this past May. My internist, who was great and coordinated my care for me with other specialists, was very worried about me finding proper care in my new town.

He gave me some great advice. He told me to listen very carefully for three little words when I was interviewing doctors. He said those three words were : "I DON'T KNOW". He said that going to see anybody who behaved as though they understood everything about dysautonomia would either be suffering from a tremendous ego (believing that their opinion made something a fact) or extremely delusional. He said that finding a physician that was willing to read, learn, and perform tests ordered by other doctors (my electrophysiologist lives hundreds of miles away) and be willing to guide me to other specialists was what I should be looking for.

I have found that there is nothing more valuable than having someone to help you navigate the medical field. Talk to everybody you meet in your new town.

In answer to your last question: No, I do not usually find anybody who has any new or different ideas about treating me. If I'm really lucky, I will find a doctor with another POTS patient. Usually, I am the one and only, but the last few towns, they have at least heard of it. Usually the best case scenario is getting somebody who listens and will work in collaboration with me.

Best of Luck,

Carolyn