I thought Andrews post to you about how he prepares for specialist appointment was great. I thought I'd share what info I get together and take in with me to any new ME/CFS specialist I see. I keep the below lists in a file on my computer (so easy to update when needed too) and everytime I see a new specialist I just print them off. Im then easily able to hand him the right list when he asks for info.
1/ A list of all my current or relevent specialists/doctors and their phone numbers and contact details (needed if you are under a lot of doctors/specialists).
2/ A list of all supplements and meds Im on with the dosages (needed if you are on a lot)
3/ I sometimes take also a list of everything Ive already tried and has failed or Ive had bad reactions too (I note by each thing what happened as much as I can remember).
4/ My Basic Non ME medical history list eg measles at 3 years old, Blood transfusion at 4 years old, EBV 15 years etc
5/ A list of Family History eg Nanna FM, sister CFS, cousin ME, uncle ..systemic mastocytosis, dads 3 brothers Celiac Disease etc
6/ A summary of how my illness first started, when it started etc (my onset was quite complex)
7/
http://wwcoco.com/cfids/bernesx.html I have two copies of that printed out. One copy I have labeled.. "My ME/CFS symptoms" and have on it highlighted every symptom Ive found I get with this illness (which is for me, nearly every symptom on it.. and I also write on that the things Ive had with the ME which are missed on that very good list). I just photocopy another copy of that one Ive got all my symptoms marked on, every time I go to new doctor.
On the second copy of that list .. I have it labeled... "Symptoms Ive had with the ME/CFS in the past 3 mths" and hightlight just the symptoms Ive had more recently.. I also date this (so it is useful to look back on, in a year or whatever. I do this "symptoms in the past 3 month" thing every time I see a new general doctor or ME/CFS specialist). This helps doctors be aware of what recent symptoms Ive had and be able to easily compare with how much worst I was before and what other symptoms I can get).
* keeping such records from the past so you have a good history of your illness, may prove helpful at later dates if you ever need to go for disablity pension.
8/ List of the questions I want to ask that doctor or tests I want to ask about.
All the things I take, due to just recopying them and making small changes on them at times dont expend much energy. Its only the record of my symptoms past 3 mths thing and my question list that I need to do afresh to take to a new doctor so I can quickly get ready for a new specialist. (hahaha wish it worked like that.. the folder I keep a copy of all my test results in is always in a mess whenever I need to see a new doctor.. see 9/).
9/ A folder of ALL my previous test results which I take too.
I always ask for a copy of my test results whenever I see anyone, I learnt to do that the hard way when doctors ended up loosing test results and not being able to manage my case anymore as it all got too complex and hard to keep up with all the different docs I see.
In the folder have a page with an index Ive typed at the front of it (another thing I have on a file so I can add a new test easily into the index and reprint it). This index has all the tests I have in my folder in alphabetical order... and all my tests are filed in the file I take with me in alphabetical order too. So a doctor can eiher request to go throu my whole file of tests or just request to see specific tests and I can quickly find the test he wants to see. (one thing I havent done but should is have a list of all my test abnormalities Ive had with the ME).
As my test folder is sooo full.. I have a separate folder in which I keep all the letters from my specialists. (I take that to appointments to but usually leave it out in the car and just go and get this second one if a doctor requests to see letters from other doctors rather then just being happy with being able to see all my test results).