An Update on my Health Problems

[LJay]

Thanks for posting, Beaux. I have been wondering just how things were going for you. Knowing what is going on must give you a tremendous sense of relief. Keep up the good work and do your best to keep up with the dosage requirements. That is a big job in itself. I try to send good vibes when I do my insulin!

[Miles]

Glad you're getting this worked out. Hoping you find some real relief

[Darius]

Jeez, your whole story going back to your diagnosis as a teen sounds awful. Do you mind if I ask what your long term prognosis is?

I think those who criticize doctors for being lazy or uncaring have had bad experiences and should know not all doctors are like that. My Grandpa was a doctor and practiced small town medicine in the beginning and specialized in nuclear medicine by the end of his career. He said as a med school student they were taught how to be diagnosticians treating everything that came down the pike. He used to say that that skill was lost in the current specialty fields. When he retired he taught at two med schools, including Mayo Clinic, where he tried to teach the art of diagnosing, among other things.

[Camfer]

Congrats Beaux on the good news! Hope the hormone therapy starts right away. Don't wait too long for the hip replacements. You want to enjoy the rest of your 40s and beyond!

[Rareboy]

The reason that they will want to wait as long as possible for the hip replacements is that they usually have to be replaced once if the person is younger when they get their first one.....

[Camfer]

Yes, I was aware of that when I posted. It's good to have that info explicitly stated, though. A big challenge in US medical world is to be in charge of making informed decisions about your own health care. The specialists scarcely talk to each other, and the patient often lacks sufficient information to decide what is best for his quality of life.

[JackTX]

I think most Doctors have good intentions but they're still so limited by our technology. When a patient complains of something they have to figure out which "tests" to give but often they're just trying to rule things out. This takes time and drains the patient's resolve to keep going, as well as costing a lot for everyone.

In many ways, what doctors do reminds me of troubleshooting a computer. And the human body is way more complex. Hopefully in a few hundred years we'll have invented the medical tricorder.

Anyway, hang in there and I'm glad you are making progress, [MENTION=13210]Beaux[/MENTION]

[Beaux]

Jeez, your whole story going back to your diagnosis as a teen sounds awful. Do you mind if I ask what your long term prognosis is?

I think those who criticize doctors for being lazy or uncaring have had bad experiences and should know not all doctors are like that. My Grandpa was a doctor and practiced small town medicine in the beginning and specialized in nuclear medicine by the end of his career. He said as a med school student they were taught how to be diagnosticians treating everything that came down the pike. He used to say that that skill was lost in the current specialty fields. When he retired he taught at two med schools, including Mayo Clinic, where he tried to teach the art of diagnosing, among other things.

Wheni I was 19, I started running a low grade fever, had trouble breathing, and just felt all-round crapy. When they did a chest x-Ray, they said I has lung cancer (although I didn't smoke), but then they did a biopsy and diagnoised it as Sarcardoisis. It is a lymphatic disorder that, in my case, affects the lymph nodes in my lungs. It is an autoimmune disorder where my body basically attacks itself when I get sick (sometimes...). For example, if I happen to come down with a respiratory infection AND I happen to be having a sarcoid "flare", then the lymph nodes in my lungs will begin to cyst-ate and cover with scar tissue. They had to remove part of my left lung that had scared over too much for it to continue to function properly and the fronts of three ribs.

Overall, I feel like my prognosis is pretty good. I still have a good little list of things I will have to do to try and straighten myself out, but I feel more confident and positive than I have in years!

~Beaux

[CellarDweller]

I'm so glad to hear about your improvements! Congratulations, friend!!!

[Steve]

It's got to be both a relief and scary/exciting to finally have a diagnosis. Isn't it great when you finally find a doctor who is bright enough to connect all the dots?

My observation of medical doctors is that there are good doctors, but unfortunately you really have to self educate, self advocate, and ask questions until you start getting some honest answers. Even then there seems to be more ineptitude among doctors/specialists these days. It isn't that there aren't any good physicians, its that they are few and far between. (No disrespect intended toward your grandfather Darius; its just that too many doctors probably don't measure up compared to him.) [MENTION=21957]Darius[/MENTION]

Mayo Clinic is my first "go to" site online when I need to get general knowledge, and frankly I always do my own research (as much as possible anyway) before I go to an appointment. When doctors start discussing the test results and begin tossing around medical terminology I want to have some kind of common frame of reference. Too often one doctor just refers you to another doctor, who orders tests, which gets you referred to another doctor, who orders yet more tests, and the cycle keeps repeating.

In any case I'm really happy to hear the good news Beau. Even if it means you have a lot of work to do in the short term, at least you have a direction and a plan of attack now. Knowing is way more than half the battle. I can't even imagine how relived you must feel, finally not being in the dark anymore. Keep us updated ok? I'm really glad for you and I'm hoping that this is the start of real progress.

xx