Medical history & terminology

[occb]

Okay -- our attempt to change to a GP who might be more understanding and willing to work with us has failed. She advised that we present the Neuro and the E Association Advocate who saw partner with the seizure diary.

I also want to present them with a medical history so they knows this isn't something new.

I need help writing these in a way that will make them take notice and read them, so they understand what is going on, and they take action.

Some specific questions I have:

should I refer to his rhytmic jerking/spasms as clonus, or clonic, or just rhythmic spasms/jerks?

should I refer to his stiff, ski-jump leg position as tonic, or is that only for total body stiffening?

how should I organize the history information?

how should I describe the meds, dosage etc.?

Any and all advice is welcome!

McGill, if you're reading, I know you've sent me this info by PM before, but out here I can't accidentally delete it, and I would deeply appreciate a re-run of what you've told me before.

Thank you in advance to everybody.

 

[Rae1889]

Well, I'd say right it like a wikipedia page.
Have an index,
A chronological line
breakdown pages into smaller groups, like med history, pain history, documented symptoms. I would also think it would help your case if you had an old friend or relative willing to give accounts on this from a longer stand point.

As far as your questions go. Use all the medical "lingo" you know, so they know you are not stupid. So yes, refer to jerkings as clonic or myoclonics and the staring spells as absences. but i'd say do it like this.

experiances short loses of time, blank stare, "day dreaming" mid sentence, head turns to one direction, eyes turn to same direction. (absence seizures)

legs turn to a stiff "ski-jump" like position or fencing position *is that stiff as well btw?* during sleep (short tonic phases)

etc. just back up your accounts with the medical terminology, and double and triple check your history before handing it in. you dont want to miss something, or word something funny.

 

[Nakamova]

I agree with Rae, don't hesitate to throw the medspeak around. That means you've done your homework, and that they shouldn't try and talk over your head.

Provide as much detail as possible, with the understanding that the docs may not read it all. For their benefit, it would be great to have a short version like an outline/timeline and a longer version detailing specific symptoms and meds. I know this sounds like a lot of work, but it will be useful for you to have it all in one place too.

When I record my history, I reserve a wide left margin on every page where I put only the meds/dosages, so that they're easy to see because they're not embedded in the rest of the text. I put the notation on every page. If the meds/dosages change, I put the new data down with a star by it -- in red ink if I'm being extra-anal. It can also be good to use heads/subheads to help break things up or indicate a new section or symptom. (Sorry, the graphic designer in me goes a little format-crazy).

For extra-credit, have your questions typed up too, with space for you to write down any answers. I did something similar when I went to see an orthopedic surgeon who was going to operate on my shoulder. He actually seemed to appreciate it, and I certainly did.

 

[occb]

So far so good -- thank you guys! You've given me a good idea on how to organize the first page visually to make it easier to glance over, and details for following pages.

I've also spoken to partner, and speaking to his ex, and attempting to speak to his brother are okay with him. If brother remembers anything, and ex is willing (likely), I should be able to get third party accounts for most of his life.

I'm a little concerned about the medspeak, because, for example, the "ski jump", is it a short tonic phase, or is it tonic posturing of the legs? "fencing posture" I think is dystonic posturing, but now I'm not sure anymore.

Yargh! More reading and research is necessary. I have a busy weekend ahead. I thought I had it all straight in my head, but I need to go through the FLE thread again. I think some of the links explain what these are called.

 

[Crystal11]

When I take notes or my friend writes in my seizure journal- we use regular terminoloy and the terms we do know, I use. I don't think it will matter to them that you use more medical terms. Sometimes thought, if you do- they might get offended because you are becoming well educated on the condition. Its happened to me with a low vision specialist and my Mom. She was learning quite a bit about low vision and deaf-blindness, and when she suggested a condition to test for, boy- that doctor got all upset and just gave her a look like "I'm the doctor and I will do what I want- and won't be told by a patient's Mom on what to do."
We changed doctors after that. That doctor just flat out said "Your girls don't have that!" When testing would have still be appropriate and would not hurt to do. Now we have lost more hearing and our vision is pretty stable but is common for Usher's Syndrom which we have been diagnosed with several times.
I am still confused about it though and want to get evaluated again by an ENT/audtiologist.

Anyway- just use what you know and the doctor can either be impressed at what you know, or be kinda offended or kocky about the situation.
The more you know, the better. You can review your records and know excatly whats going on.

Take care
Crystal

 

[Meetz1064]

I have

to agree with Rae and Nak that adding in as much medspeak as possible is a great thing to do.

Making sure that it is all in CHRONOLOGICAL order is probably the most important thing. That will show the true progression of things for the neurologist.

When you're not positive about the clonus/tonic terms, I would simply put in the terms that you have to describe the positions (ski-lift, etc) with the words clonus/tonic off to the side or in parentheses.

Good luck.

 

[occb]

Thank you for your responses Chrystal and Meetz!

I;m going back and forth with the medical terminology, for exactly the reason Chrystal said. We have a GP who has already pulled attitude on us for researching side-effects of meds online, so imagine what he'd do if I went all medical on him...

I think the final decision is partner's, since it's his diary, and he'd prefer descriptions to technical terms because he's had problems with doctor's attitudes about doing your own research. So, in the end, that's how I've written most of it. I've tried to be clear and concise, I made the diary point form and in chronological order (it's in a table with the headings date/medication/experiences) I haven't had time to tweak the history yet, so the daily experiences from the last month will have to be enough.

I'm nervous about the assessment tomorrow. I can't be there with him, but I'm making him call me as soon as he's out.

 

[Nakamova]

I'll send good wishes his (and your) way for tomorrow's assessment. It's a full moon, so be prepared for anything.

 

[occb]

Consider us forewarned Nak! Maybe that'll be a good thing, and that means the docs will believe him for once, and recommend something useful.

 

[drarvindr]

Here's how we present medical cases :
1) personal info : Mr. ______ is a ___yr old caucasian/african-american /asian male , residing at ________. He presented with compaints of :
2) Chief complaints ( what is the problem NOW in chronological order in NON MEDICAL lingo) , for eg,
a) jerking in his leg on and off for the past _______ associated with _________
made worse by ? or better by ?
3) ODP (onset - duration - progress).
Mr. ______ was apparently alright last november (for eg) when he noticed _________ blah blah blah ( you know this part better than anyone.) Ensure that material here is in MEDICAL lingo , and that the entire history is chronological and has a "flow" to it.
4) Past history : Mr ________ was diagnosed with epilepsy (type) in ____ for which he has been prescribed the following meds :
blah blah blah
( If this is the case) He also suffers from ________ since the last _______ for which he is taking _______.
5) family history :
draw a family tree circling in a different color any members who are afected with similar symptoms or any members who have any ailments (specify)
6) social history (alcohol / tobacco/ diet / exercise / sleep habits)
7)Investigations so far ( in chronological order)

that should cover all the relevant aspects. keep this checklist in mind and u shud b OK
Pm if u need anything
ALl the best ,
Arvind

 

[occb]

Thank you Drarvindr!

Writing his proper history is my next project. When I start it, I'll PM you with any questions I might have. I really appreciate your help. Thank you.