FAQ/Help |
Calendar |
Search |
Today's Posts |
![]() |
|
General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
Reply |
|
Thread Tools | Display Modes |
![]() |
#1 | ||
|
|||
Member
|
Researchers have identified a particular gene defect (PHOX2B) associated with congenital central hypoventilation syndrome.
I spoke to Rush Hospital in Chicago. They told me to draw blood normally, send it regular mail ... with a check for $670, or money order. They are the only, only lab I found that does this test. I called several places on the internet, places doctors suggested and so on. Anyone know of a "better" place?
__________________
Things could always get worse!! Sure enough, things got worse. . |
||
![]() |
![]() |
![]() |
#2 | |||
|
||||
Member
|
Yikes!
Make sure you know the type of tube (i.e. if it is a serum or EDTA tube)... and they don't have a kit to send it in? Most places have a biohazard kit and special packaging so the tube does not break and if it does, it does not um, get all over other stuff. http://www.newsrx.com/article.php?articleID=906020 mentions Johns's Hopkin's but otherwise it is all Rush like you said... I could not find anything else either.
__________________
Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
|||
![]() |
![]() |
![]() |
#3 | ||
|
|||
Member
|
Try GeneDx, they are on the east coast, maybe Maryland, if I remember right.
|
||
![]() |
![]() |
![]() |
#4 | ||
|
|||
Member
|
Thanks, I will.
My pulmonologist knows the lady who owns this lab but he did not offer to run interference. Grrrrrrr.
__________________
Things could always get worse!! Sure enough, things got worse. . |
||
![]() |
![]() |
![]() |
#5 | ||
|
|||
New Member
|
wow.. do you have FSA or HSA you can use to pay for that?
|
||
![]() |
![]() |
![]() |
#6 | ||
|
|||
Member
|
I don't know what FSA or HSA is. I have Medicare, Tricare For Life and a third medical insurance that pays what Tricare doesn't pay.
See the thread about taking 30 minutes to wake up.
__________________
Things could always get worse!! Sure enough, things got worse. . |
||
![]() |
![]() |
Reply |
|
|