View Single Post
Old 11-01-2007, 04:52 PM
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
Default daniella--

--you do seem to have a lot of things going on at once, but is uspect they may be seperate manifestations of a more basic, underlying disease process, and I wonder how much of it may have to do with your previous hostory of eating disorder.

Many of the symptoms may still be a recovery process from the deprivation involved with that. Some may be manifestations of deficiencies still being addressed. There may even be a degree of permanent damage from tissues deprived of proper nutrients for too long.

You may want to start this from scratch--going to a tertiary center, like Hopkins or Mayo, and being VERY specific about your history, getting as many copies of your test results over the years as you can (I realize you may not be able to get a lot of them from the earlier years--and that you'd have to have cooperation from your guardians for material accumulated when you were still a minor), and then getting a major "from scratch" work-up.

One sense I've gotten from your posts is that you are somewhat uncertain as to how to describe certain symptoms, and have trouble expressing what you've been through to new medical personnel. Given the ways that doctors interpret their patient's communications, and how quickly they form hypotheses, you may be at a disadvantage here. I, and I'm sure others here, would want to help you with your medical "presentation"--how you approach the doctors and tell them things.

This is one reason reason I constantly recommend the Liza Jane spreadsheets; they really help people formulate that presentation. They're also a wonderful way to track one's testing history over time, evaluating it for thoroughness and for possible patterns.

I also think you need a "medical history" summary sheet with your major symptoms/situations chronologically arranged, as well as what diagnoses you were given at various times. If, to put together, that takes getting a lot of doctors notes, try as hard as you can to do that--getting those notes may provide a great deal of insight into how your doctors were (or were not) thinking.

Too often, with someone with your previous history, the docs will interpret everything in light of that history (the eating disorder). That may not be inaccurate, but they tend to interpret it in psychological terms, and look askance at your symptoms from then on. You want them to look at in PHYSICAL terms, to see how much it has to do with what is going on in your body now. To that end, strive to give them information that will encourage them to problem-solve, rather than make snap decisions.

I suspect you have endocrine dysregulation, probably still have vitamin/mineral imbalnces--but a lot of test results may be skewed by the meds you've been on . . .it may be better to try for a new beginning, a new complete work-up, in a place where members of many specialties will work together and hopefully communicate with each other.
glenntaj is offline   Reply With QuoteReply With Quote