Retiring neuro

[Donna]

I was informed yesterday, October 27, that my neuro is retiring Dec. 31 because he can no longer deal with the as he puts it "the black communist in the White House" and is giving up his practice. I have been going to this man for 40 years and have no where to turn. He will not recommend anyone as he does not do that.
I feel that he has let his political views get in the way of his patients and I am furious!
Does anyone know of a really good neuro in New Jersey who has a lot of compassion for his patients the way that this doctor did? He would spend hours with you if necessary. Now he heas given up because of Washington.

I am freaking out about starting all over again with someone I do not know.

If anyone can help, it would be greatly appreciated! Has anyone else had this problem or am I the lucky one?


Donna

[Whaler]

WOW I am really sorry. I don't understand why that is even an issue for a physician. I know a lot of great neurologists in the Boston area but none in New Jersey. Good luck with your search :(

[Donna]

Hi Whaler! Thanks for the response. I was really afraid that I had offended everyone and never meant to. The reason my neuro is retiring is because he knows that we are headed for socialized medicine and that is something that he cannot face. I feel that he is putting money ahead of his patients and this to me is totally unfair.
Now I feel like I am not important anymore and I do not know where to start looking for a new doctor since this man is the one who diagnosed the dystonia in 1991 and it is very hard to find anyone who has even seen it.

Thanks for the post and I will definitely keep looking. I just hope that other doctors are not panicking the way that he did and leave people like us in the dust.

[Ellen S]

Donna, I wish I could say that you are alone. I am dealing currently with a similar situation. My neuro moved and is now concentrating on running an epilepsy center a few hours away. I don't have epilepsy. :( I miss him so much. The neuro he referred me to is sadly, one of the worst docs I've ever met. She got upset at my thick file and referred me to Chicago - way too far for me to trek when needed. She refuses to treat me. The CEO of our hospital is looking to hire 3 new neuros because she is apparently single-handedly alienating most of the neuro patients. Unfortunately (I blogged about this here) there are about 10,000 jobs and only 3000 doctors to fill them. In a country place like this, even tho it's a university, a guy has really got to WANT to come here. It may be years before he is able to find a single neuro, let alone the 3 he has his heart set on. There is a tremendous need here, but we are a quiet country area, not full of exciting cases to add to any journals.

For patients like us, this means we have to "doctor shop". Like you, I have dystonia - something most neuros have never seen and are clueless to treat. Rarely will one admit they don't know how to deal with it though, so I have to find out the hard way. I also have Migraine. Migraineurs, especially super tough cases like mine, are not welcomed by most doctors. I would love to not be wasting my time going from office to office to office and wasting days of my time and enormous amounts of money trying to find someone who can treat me, but that's sadly, the way it is. If you are in a more metropolitan setting you'll have an easier time. Once you get an appointment, don't forget your personal health advocate!

I do have a few tricks I'll share. You can try them and see what you think.

When I make an appointment, I try to get another doctor to refer me. I get in faster and getting records transferred is easier.

When I make an appointment I talk to the office staff and get a feel for them too. I ask them questions about the doctor and how the office is run (scheduling, if they run on time, etc) These are the people you'll have the most contact with and can make your life miserable even if you do find a good doctor.

I ask about the doctor's expertise - If I am a dystonia case, and the doctor doesn't do dystonia or movement disorders, I'll not likely have much luck.

I ask for a consultation that lasts at least 1/2 - 1 hr. If you have chronic illness you'll likely need this much time for him to get a history and read your chart.

I ask if the doctor utilizes email, and if he/she does IV therapy for my Migraine issues. You may have other issues you might like information on.

I look the doctor up online.

When I'm looking for a doctor to help me, I talk to everybody. The next neuro I'm going to go see was referred by a pain medicine specialist, who was referred by my endocrinologist. I only asked the endocrinologist because we were in a desperate emergency situation and I was grasping at straws. He's been my best resource to date! Go figure. Not the usual route, but I'm hopeful this will be a good fit.

You may want to consider becoming a member of a community that is specific for your disorder/disease. Often you can ask there for referrals from patients. Barring that, there are many online websites for specific disorders that have a physician look-up for specific specialties and sub-specialties. These are good to try. If that fails, find a site with information about your disorder and hit the contact button. It sometimes takes a few days, but you'll likely get a response that may help you with locating a doctor nearby that is knowledgeable in your particular area.

Also, doctors are not allowed to abandon you. I understand his frustration, but he knows that it's obligation to help you find a new doctor. If he's terribly frustrated this may be an exercise in futility. You don't want him to pick a name out of a hat. However, an appointment might be in order so that you can talk to him face to face and voice your concerns. If he has helped for 40 years, I would think he would help you do this one thing.

Additionally - before he leaves, be sure to get a compete copy of your complete record. This means papers. All of them. Put them in a binder and don't lose them. It may take you a while to find a new doctor and you'll need these so you don't have to start all over again when you find one that can help you. Make a second copy for the new doctor, and when you make an appointment, be sure to send the records well in advance so he/she has time to look them over. Be sure to get enough prescription refills to last you several months or a year so you won't be caught with no doctor and no medication.

I would like to introduce you to a great Health Activist. Her username is dk and she's great with teaching the ins and outs of the system. She probably won't be able to point you directly to someone, but she can probably help you search smart.

Have you written to Beka yet?

Good luck Donna. Please let us know how you're doing in your search. If I hear of anything personally, I'll be sure to let you know. Keep it up in the community. If you keep talking about it, someday the right person will see a comment and hopefully help you out.