Knowing every single one of my symptoms is a challenge. Not only are there likely over a hundred symptoms, but some *might* be caused from medications.
When dealing with specialists, it's really tough to know which symptoms they are actually interested in hearing about. In theory, we should be telling each doctor about every symptom, but sometimes it's pretty obvious that they only want to know about the symptoms that affect the parts of the body that they specialize in. And, let's face it, does each doctor really have time to hear about a hundred symptoms, some of which have nothing to do with their specialty, and others are from medications that they themselves didn't prescribe? No.
The unfortunate part about this is that, in my case, there is only ONE doctor who knows every single one of my symptoms. No, not my family doc, my internist. Who, ironically, has had to take a leave of absence. His chart is the only one that contains every symptom I could think of, and I even had to send him more information a couple of days later because I had forgotten to tell him about one huge one!
"How can you forget a huge symptom?" - you might be wondering.
Well, when you are dealing with so many, and when certain symptoms only occur every few weeks and aren't a daily occurrence, it's easy to let it slip your mind during a four hour appointment.
I had the unfortunate circumstance of having a less-than-great appointment last week in which something was dismissed because I "had no symptoms of it".... Although in reality, all of the symptoms that he was looking for I actually DO have - and HAVE had for several years - but he didn't know about them. I didn't get a chance to explain that to him as he swiftly left the room, and frankly even if I had told him, he may have thought that I had made them up just then to get his attention.
What a doctor really needs is my personal medical records and all of the symptoms that I write down in my book. It doesn't list everything day to day, of course, but pretty much all of the information is in there!!!
So how do I get all of my doctors on board? How do we combine care instead of drawing lines in the sand on which symptoms are appropriate to talk about with which specialists?
One proposed solution is to have an Internist see me as an outpatient on a regular basis (this was proposed BY my internist - who, of course, is now gone). I am crossing my fingers that another internist will take that same interest and that same viewpoint and take my case on.
Cross your fingers for me!!!