For those of you who were following the topic on here where Dr. Afrin suggested I go back and have my biopsies from my colonoscopy in 2010 re-tested (and he listed the suggested tests), I wanted to update you. I have learned MANY things over the past couple years and during my search for a dianosis. Here is yet another lesson. I went to my family doc to ask him to write the request for tests for me since all the other docs didn't want to do it. They were not familiar with the tests, therefore didn't want to order them. SO family doc agrees to do it. Of course I told him he wouldn't have to read the test results for me and that I would send my results to Dr Afrin in South Carolina. So I take the prescription with the 3 tests listed on it to the lab that has my biopsies. Two weeks go by and I have not heard anything so I call them. I was then transferred to the doctor of this pathology lab. She informs me that I need to come in for a blood draw (REALLY? No one called me during the two weeks following my delivery of this request for tests!!!) OH IT GET'S BETTER......hold on.....This doc also tells me that two of these tests are done from blood draws (serum tryptase and Plasma Histamine (chilled)) and the last test (CD117) is done from the biopsies. Well "SHE" has decided not to do the CD117 until they get results back on the Plasma HIstamine which will be at least two weeks because they have to send that test to another lab about 2 hours south of here. I told her that ALL test's needed to be done regardless of one another's results. Then she tried telling me because of insurance reason's that she didn't have everything from the doctor she needed to do the CD117 and it be covered. Little did she know that I personally had to call my insurance BEFORE I requested my family doc order these tests just to be sure they were covered and ALL steps needed to insure this coverage. When I told this lab doctor that she got MAD at me and professed SHE WAS NOT RUNNING THAT TEST UNTIL SHE GOT THE RESULTS OF THE OTHER TEST BACK and she hung up on me! She hung up on me! OUUUUUU! I had an appt that morning with my family doc so I got in my car drove to my appt, talked to them about this and they assured me there was nothing more required from them to run any of those tests. So after my appt I drove 45 min. to this lab and sat outside her door waiting to talk to her and she REFUSED to talk to me. Said she was very busy. Of course while I was there I had to get my blood drawn. So they hand me back the script and I notice someone has crossed off the serum tryptase. I asked about this. I was told they didn't didn't know what that test was so they scratched it off! OH MAN! I have been shocked beyond words that she thinks she can determine what tests she wants to run and not run and to over ride a doctors orders and just omit a particular test. Well this is where I am now with this. I have contacted another lab and found out that I can request to have my biopsies MOVED from her lab to another. This lab also said that they can do ALL the tests right there and not have to send them off. I'm going there today to sign the request forms AND my family doc said he would rewrite the order for the tests. Unbelieveable the amount of struggles we go through for a diagnosis!!!!! SO NOTE to anyone who may not feel comfortable for whatever reason with one lab (or a doctor you may be seeing), know that you can take control of YOUR health and find a lab or doctor that you feel better about. Just because they are doctors, obviously they are not ALL knowing and have your best interest at hand. Or perhaps they do have your best interest at hand but they just aren't equipped with the proper knowledge to do what is best. This is where you MUST be your own advocate. Educate yourself about health matters pertaining to you and don't be afraid to get second or third opinions or to do something outside of your comfort zone. You may be limiting your possibilities! After all you are the one that goes home and suffers through your symptoms and disabilities....not them!

Kim

Ditto on that!

Thanks for sharing and that's so awesome that you stuck to your guns.  You shouldn't have to work so damn hard for tests but you're kicking ass.  Good for you!

I'm still fighting with Lab Corp to even acknowledge that sm or mcad exists.  The only code they have is for malignant mastocytosis.  But since I work at a doctor's office and just pretend I'm calling for a patient, they aren't treating me like a pesky lunatic.  Sorry you had to go thru that.  Let us know your results please.