• Great point in your article. Oftentimes we have to become an advocate for ourselves at great expense. Sometimes it is something simple that the doctors should be able to fix or diagnose. For example, I had to see 4 doctors, a specialist, take 4 different antibiotics, run 100+ fever for over 2 weeks straight, and have 6 vials of blood and multiple other test done just to tell me after over 2 weeks that I have tonsillitis. Doctors either refuse to look at something complex and rare or look too much for those and forget the simple diagnosis.

    March 7, 2011 at 8:53 p.m.

  • TRYSTA: GLAD YOU PERSEVERED Or as someone said perseverated.

    February 28, 2011 at 4:28 p.m.

  • While seemingly rare, many people are just simply not diagnosed. They die from strokes or clots without it ever being discovered, or go their whole lives with complications that have no apparent explanation. I don't think my current doctor even really knows what the disorder is, but was present enough to run a panel of blood tests and saw this obscure protein was low.

    With the many ailments, diseases and disorders out there, doctors can hardly know everything at all times. But to have the courtesy to be honest about that and keep vigilance over their patients' health, referring them to other doctors when necessary, that is the mark of a good human being and physician.

    February 28, 2011 at 11:33 a.m.

  • Consider yourself very fortunate. If your condition is one shared with only two thousand people in the world, it is so rare as to be unheard of by almost all practicing physicians. If this condition is mentioned at all in medical school, it would be in passing in the course of years of school and residency. That you found a physician who knew what to look for and could diagnose it is almost pure luck. You are one lucky lady.

    February 26, 2011 at 3:52 p.m.

  • @trixie50: I think you're right. Patients have to put so much time and effort into their own care because many doctors don't have time and effort to put into them. Unfortunately, instead of admitting "I don't know what's wrong with you. Let me refer you to someone else," some doctors come up with what seems like an off-the-wall answer, invalidating your feelings in the process, and just prescribes medication to get you out of their hair.

    February 25, 2011 at 4:22 p.m.

  • Thank You so much on this information! I feel alot of people are misdiagnosed. Doctors Just want to "fix" the problem and not find out why there is a problem. I believe we have to go to several Doctors to get the correct help. Sad that we do and most don't because of time, or lack of funds/insurance. Great to here you saved your life! Maybe you should picket that %$$@%%k Doctor and make it known he isn't the Best! Again Thanks for the Blog!

    February 25, 2011 at 3:35 p.m.