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06 Jul 2016, 9:54 pm

I'm a TERRIBLE advocate for myself in front of doctors.

I have a much awaited appointment with my neurologist tomorrow. I did manage to get my aunt to come with me.

Specifically, I want to ask if he can check for a retroflexed odontoid. But, I have deep-seated fears about acting "too intelligent" at doctor's offices for a variety of reasons. (My mother first started teaching me how to "dumb myself down" for the benefit of others when I was about 10. Noticeably, she didn't do that for my brother...)

Anyway, any tips for talking with doctors would be fantastic!

I've got all my symptoms for my current issue written down as well as two questions (the retroflexed odontoid is in there, but it's "dumbed down" to "is there anything pushing against my brainstem?").

He may decide I need a shunt tomorrow (minor brain surgery). (The decision might be tomorrow, likely not the surgery.) But, I need the courage to ask if the neurosurgeon has experience with the EDS population.

Going to the doctor is so hard. :oops: It's probably my single biggest communication problem (because it's so dang important).


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I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


C2V
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07 Jul 2016, 7:41 am

I write things down too, and either obviously read that off to the doctor, or if I'm doing even less well speaking than usual, actually write them a note in point form and just hand it to them. It might be weird but you'll get your point across and won't wimp out and stay quiet, or forget something.
Also I wouldn't worry too much about "dumbing down" when speaking to a specialist. One hopes that they'll know what you're talking about if they are capable in their field, and are very unlikely to be confused by technical terms particular to that field. Honestly if you cannot use neurological terms when speaking to a neurologist, it's time to find another neurologist.
The warning may have been against Dr Google - doctors don't take kindly to a patient turning up with some generic symptom they have looked up on google, amateur diagnosed themselves, then come in and tell the doctor what to think.


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kraftiekortie
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07 Jul 2016, 8:09 am

I TRULY hope this doctor will listen to everything you've got to say--especially if he/she is a neurologist.

Write everything down. This is YOUR time. You want to get to the bottom of this. You have to list every symptom, every duration of symptoms, every intensity of symptoms. How often? How much does it hurt/itch/feel? How it affects your eyes. How it affects your whole body. Stuff like that. Also: make sure you have your medical history handy, input from other doctors throughout your life.

Neurology is a very exact science. One duration of a symptom could mean one disorder; another duration could mean another disorder.

If he's not the only neurologist in your area, then I would seek out another neurologist if this person doesn't bother to listen.



Noca
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07 Jul 2016, 9:24 am

I type out an agenda of all the issues I want to cover for each appointment. Each agenda has my name, date, and the doctor's name. I organize each issue 1,2,3,4,5 etc. I also write a summary update at the bottom of the page, of issues that don't require any action on the part of the doctor but simply update my doctor(usually my family doctor) on what's happening with the rest of my health team and my health. I hand a copy to my doctor each appointment and I print a second copy for myself to look over while he/she read's their copy.

This not only helps bypass your average doctor's ability to ignore you, it makes the appointment run more efficiently allowing you to get through more issues than if you tried to verbally describe them, prevents you from forgetting issues in the moment that need to be addressed, but it also gives you a physical copy which you can refer to in the future if a doctor tries to claim you didn't tell them something.



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07 Jul 2016, 3:30 pm

Noca, what is your typical response like from doctors when you do this? I see you are in Canada, so it may be different (I'm in the Southern US.). We have a stereotype that all Canadians are very nice...

True story, my husband was once deported from Canada (he had a last minute job and lied on his paperwork that it was a personal visit, but since he flies around the world for work, they knew it was a lie...). Anyway, they offered him two options: spend the night in jail or go to a hotel and promise to come back in the morning. :lol: :lol: :lol: (he chose hotel). But, I just find the whole story fascinating.



Anyway, I wrote stuff down and I ended up just handing it to the doctor. He didn't need a huge history, he's been my doctor for a long time and has seen me through all my major issues.

It went really well. I forgot how nice this doctor is.

And, it did help that I wrote down something specific and "technical": craniocervical instability. He hadn't planned to run any tests for that or to consider it, but once he read it, he thought it should absolutely be checked AND that I should obtain a copy myself to bring to my geneticist. So, being me paid off. Yay! (It won't always work out in my favor, but these experiences help grow my confidence.)

As for the shunt, he has not decided yet and we have some more tests to do.


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So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


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07 Jul 2016, 3:32 pm

C2V, it's looking like Dr Google that I'm afraid of.

(My mother went several steps ahead of that and it was all pre-Google when she taught me this. I now think it was a little sexist. She didn't teach it to my brother. And I'm sure she wasn't being mean, just carrying forward traditions and culture. That's another topic though.)


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So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


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07 Jul 2016, 3:35 pm

Oh, I did find out via x-ray that I've got some arthritis in my neck. I'm too young for this!! ! (Maybe I'll show my neck my driver's license and it can reconsider? :lol: ).

In all reality, my Ehlers-Danlos predisposes me to early onset OSTEOarthrirtis. I began getting some in my hands and my jaw in my teens, so it's not surprising. ...but it is painful...


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So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


kraftiekortie
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07 Jul 2016, 4:46 pm

I'm glad you had a nice visit.

What did he give you for the arthritis?



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07 Jul 2016, 4:50 pm

Nothing yet. The radiologist told me.

I've had medicine for arthritis in my hands before, but I forgot what it was called.


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So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


kraftiekortie
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07 Jul 2016, 4:56 pm

I don't think that will interfere with your Appalachian Trail plans.



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07 Jul 2016, 5:00 pm

kraftiekortie wrote:
I don't think that will interfere with your Appalachian Trail plans.


Nope!

I don't plan to let anything interfere...

When I couldn't walk and while I was recovering, I had researched robotic legs, lightweight wheelchairs, and the portions of the trail that are wheelchair accessible (in case I wanted to lug it along and use it for those places...I doubt I will...I'm just saying, I don't plan to let anything stand in my way).


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So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well


Afam-dfw
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21 Jul 2016, 5:15 pm

Like others have mentioned, I'll write out a list of questions or info for the doctor. Along with taking it to the appointment, I sometimes fax the list to the doctor a couple of days before the appointment with a cover explaining that these are the things that I look forward to talking about and if there are tests that should be run before the appointment, please let us know.

This works well for both my appointments as well as for family members that I'm taking to the doctor.

For hospitals, I ask that the questions be placed in the chart for the doctor to see when they stop by. Avoids forgetting things when the doctor swings by at 6am.

Glad the visit went well and hope this helps for the next visit.



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03 Aug 2016, 11:25 am

I see that you already got through this, but I just wanted to encourage you to keep using your instincts and just give the technical information. Don't dumb it down.

I have a rare neurological disease and most neurologists I go to haven't heard of it, or only read about it in passing when they were in school. I just tell them what I have and then explain it to them without them asking. It saves them pretending to know what I'm talking about. It sometimes comes off as rude, but the ones who get offended are usually also the ones who are idiots.

Don't forget that sometimes doctors are stupid. I have personally known several. When you figure out that you're seeing a stupid doctor you just need to move on to a different one.

A good one will listen, ask questions, and work with you to figure things out. It sounds like your doctor is doing that. So keep doing what you're doing and try to forget your mom's obviously well-meant, but sexist advice.



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03 Aug 2016, 2:11 pm

Truth be told, I'm bad at talking to doctors as well, though I am better at it than I was when I was younger. Most of the doctor's appointments I've attended seem to involve waiting for 45 minutes and only talking to a doctor for like 5 minutes or less, before being written a prescription for something.

Whenever I go to see a doctor, I'll make a mental note listing the things I want to talk about, though admittedly this isn't the best way to do it. Lately, I have been getting into the habit of writing down notes on my computer and phone so that I can remember things more easily. From the sounds of it, a lot of other people in this thread have had success with similar methods of remembering things.


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thoraz
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05 Aug 2016, 7:16 pm

Im such a clown when I see a Doctor. I never know when to sit or when to stand up. Is the session over or ? I hurry alot and talk fast because Im nervous. I often write down a list or what to say but I some times forget things because Im to busy looking at some birthmark on the persons face or something else interesting or strange around me. It is hard to focus.



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05 Aug 2016, 9:24 pm

SocOfAutism wrote:
I see that you already got through this, but I just wanted to encourage you to keep using your instincts and just give the technical information. Don't dumb it down.

I have a rare neurological disease and most neurologists I go to haven't heard of it, or only read about it in passing when they were in school. I just tell them what I have and then explain it to them without them asking. It saves them pretending to know what I'm talking about. It sometimes comes off as rude, but the ones who get offended are usually also the ones who are idiots.

Don't forget that sometimes doctors are stupid. I have personally known several. When you figure out that you're seeing a stupid doctor you just need to move on to a different one.

A good one will listen, ask questions, and work with you to figure things out. It sounds like your doctor is doing that. So keep doing what you're doing and try to forget your mom's obviously well-meant, but sexist advice.


If you don't mind me asking, what do you have?


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So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well