I made a "pamphlet" for my docs

General Erythromelalgia 101
1

Hello -

Something I did earlier this yr that I wanted to share - is that I made an easy-to-read, concise summary of my case for any specialist / doc I currently see / will see. All docs have told me it has been very helpful for them and one has said more helpful/time-saving than whatever’s in the hospital system about me. Eg, I included -

Table of contents (so docs can zoom into whatever they want)
My goal (be able to think during heat/burning/meds, be able to leave home sometimes) (1 sentence)
Questions (~3 q’s)
Specific Symptoms (also which meds helped / worsened which symptoms) table
My plan (I always tend to have my own in case doc has none :p) (bullet pts)
Current medications (dose, since when, what it does) table
(*) Meds tried but not currently taking (organized by vasoactives, anti-seizures, etc - how long tried, and result) table
Images (~3)
Background (was suggested by a friend to include something like this ha, didn’t think docs would even want to read this but some did! … very short :stuck_out_tongue: … also what was going on at EM onset)

In particular for patients like me who have tried many medications rx’ed by many docs where it’s hard for anyone to keep track anymore, (*) helps to lay things all out in one place and can help make sure nothing falls through the cracks (eg dose wasn’t trialled high enough).

printout or can message doctor a link to a google doc (hospital messaging systems tend to have a word limit)

take care

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Can you share an example? I’m in the beginning stages of trying all the treatments… and so far nothing is really helping, but this would be very helpful. I’ve been keeping a journal and what you’ve listed is good to have written down too. Thank you!

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Sure! I’d prefer not to share all my info specifically but here is an example excerpt from my “medications tried, but not currently taking” table -

medication (max dose) / Trial length / result

I am sorry nothing is helping you so far.

1 Like
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What a brilliant idea! Thanks for sharing this so that other patients may consider doing something like this. I know that I need to create a doc of current medications and all surgeries. I’m starting to forget them, and I certainly can’t remember all of my dosages.

Sharon

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So impressed! We often tell patients to write down questions for their doctors and take them along on appointments. I’ve never had anything but positives from doing that.

Expanding it to make a more comprehensive case document for yourself is a really really good idea. Thanks for sharing it!

Seenie from ModSupport