Oh no, not again! A new Neuro, and starting all over from scratch...
Okay, help needed here guys. My Neuro is leaving and going to Columbia University. For anyone near there, this is great for you, but for me it means starting over from scratch with a neuro who likely doesn't have any experience with Dystonia. Of course, there is the scary part of starting over AGAIN with my Migraine issues as well. That's a whole other story.
Any good ideas how to start the conversation with the new neuro that basically says "hey, I do NOT want to start over again from scratch, I just want to continue from where I left off with Doc #1" The frustrating thing, is that every time this happens, the new guy always wants to go over all the old stuff, all the old drugs, tests, yadda yadda. They want to be *sure* all the bases were covered, especially in us complicated people. They're nervous about prescriptions, standard of care etc and want that paper trail. I don't have the money, the time, or the patience in dealing with the pain to go thru this yet again.
I'm so very frustrated.
I see my old Neuro one more time. I'm hoping he will put some nice short note that there is no need to begin again, this is the current treatment and he suggests we continue where we left off.
Anybody have any ideas????
Any good ideas how to start the conversation with the new neuro that basically says "hey, I do NOT want to start over again from scratch, I just want to continue from where I left off with Doc #1" The frustrating thing, is that every time this happens, the new guy always wants to go over all the old stuff, all the old drugs, tests, yadda yadda. They want to be *sure* all the bases were covered, especially in us complicated people. They're nervous about prescriptions, standard of care etc and want that paper trail. I don't have the money, the time, or the patience in dealing with the pain to go thru this yet again.
I'm so very frustrated.
I see my old Neuro one more time. I'm hoping he will put some nice short note that there is no need to begin again, this is the current treatment and he suggests we continue where we left off.
Anybody have any ideas????
Tags: communication, letters, neurologist, new doctor, starting over, testing, treatment
Replies to This Discussion
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Permalink Reply by Imove on -
Is it possible he might know someone already experienced with dystonia that he could refer you to, even if you had to travel a reasonable difference?
~Connie~
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Permalink Reply by karen on -
hi ellen..i can understand how frustrated you must be..it takes us some times years to establish a good relationship with our dr's..and if they are good ones they can feel like friends..the same thing happened to me a few years ago..when my insurance company out of the blue decided that i had to stop seeing the dr. that i had been seeing for years and go to a new one that they had picked out for me..i was afraid of the same things happening that you are worried about..it's hard enough to go thru all of the tests and trying to find the right medicines the first time around..and sometimes the second or third time until we find the right dr. that the thought of having to do it all again is almost horrifying!!..what i did was ask my dr. to write a letter to the new dr. summarizing what we had done over the years..tests that had been run..what prescriptions we had tried and if they worked or not and the treatment plan that i was on..and instead of his office sending my files and the letter to the new dr i carried them with me..so that when the new dr came into the room i was able to hand it to him..he took a few minutes to go thru it and then we went over everything together..it was a great ice breaker and the way that he handled the situation let me know that i was in good hands..he was pleased that i was as involved in my treatment..he had a few ideas of his own and together over the years we have been able to establish a good relationship..
i know how lucky i was to have my situation turn out as good as it did..and sadly the same thing won't happen to everyone that has to change dr's..but i think that taking my files with me instead of them being mailed or faxed over and a letter from my old dr. explaining everything and being able to talk as he went thru read the letter..nstead of him speed reading my files 2 minutes before he came in the room really made a big difference on how things got started..it made him stop and see me as a person with a disorder..not just a name on a file..
hope this helps..i wish you luck with your new dr..and i hope that he's smart enough to listen to you because you are a very intelligent woman who has been very involved in your care..take care and let us know how it goes..
karen
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Permalink Reply by beka on -
Hi Ellen - remind me where you live again - I know its horse country !! We will find you the right neuro person...
Who is headed to Columbia now ???
beka
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Permalink Reply by lissamel on -
I would also suggest having a copy of your medical records from your current neuro doctor as well as the letter Karen mentioned. This helps the new doctor "see" more than what is written in a letter as well, especially for any previous testing that have been done.
Mellissa
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Permalink Reply by Thorns on -
So Ellen, have you been able to find a neuro yet and if yes do you like him or her. Thorns
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Permalink Reply by Ellen S on -
I guess I'm going to have to go with the new one coming into the office. All my records are there. I have an appt in June to see her. If not, I may be able to do tele-medicine as he is unsure if she knows anything about dystonia. I guess I'll find out more in June. she's definitely not a movement disorder specialist, but neither was he. He knew much about dystonia from dealing with it so often.
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Permalink Reply by Ernie on -
Hi Ellen,
How far are going now to see your neuro? I know that it is difficult for you at times to travel any distance but we do have great one that we see in Iowa. If you'd like more info on him, please contact me at my regular email and maybe we could even give you a call if that would work for you.
Regards,
Ernie
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