Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Pam, listing your symptoms is a very good idea. I have kept a symptom diary since I first started having weird stuff happen, and it has proved invaluable. For instance, long before the burning & neuropathic pain started in my feet, I had intermittent sensations on the bottom of my feet that felt like pieces of tape stuck on my feet. One night I actually pulled my feet out from the covers, because I was sure that I had tape stuck on them! That gradually spread to cover the bottoms of my feet from the arch forward & became constant. Then to the numbness was added a slight burning sensation, like when you have your feet too close to a fire. Eventually, more intense burning & sharp, stabbing pain developed. But it was helpful to look back through my notes & see when I first had the "tape" feelings. I type everything up & save it in my computer, as well as keeping copies in a big binder. Note everything, even things that don't seem significant. It may all fit together someday. Every time I go to the doctor, I type up my symptom status (for my local neuro, who has a great sense of humor, I'll title it "The Saga Continues," or something similar) with the date, save it in the computer, then print out two copies, one for me & one for the doc. At the end, I usually add questions and what my hopes or expectations are. My local neuro calls it "The desired endpoint of treatment." So I try to have something specific to shoot for--improve sleep, discuss alternatives, etc. Sometimes, just to liven things up, I'll include "Become rich & famous" or something else silly. It has the advantage of my doctor actually reading the whole thing to see if I've put something funny in there! I don't let him leave until I've addressed all the issues & questions. Sometimes I've taken someone with me to make sure he doesn't escape before I'm done. I take notes on my copy & file it in my binder. Anybody else have other suggestions? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Debbie T. RE: DisabilityDate: Sun, 04 Mar 2007 08:00:30 -0000 to: Ramblin Rose, Bonnie & Bless you for your responses, it does help to know your not alone! Even though I wish NOBODY had to go through this!, your story is soooo close to mine! It is amazing now that I know I have sarcoidosis how many of my symptoms can be atributed to this. I the last year I have seen 7 doctors, why couldn't anyone put it all together! Right now I am working on a list of all the symptoms over the years so I can give it to my neurologist on the 6th and the breast surgen on the 14th.Thanks all of you for the support!!!!!Pam Don’t miss your chance to WIN 10 hours of private jet travel from Microsoft® Office Live Quote Link to comment Share on other sites More sharing options...
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