I have an immunologist at Stanford, so I have a fair amount of experience with this sort of thing. When finally getting referred to an immunologist, there have already been at least one or two doctors involved, all doing diagnostics. Each will have ordered a lot of tests. One time I had so much blood drawn, I was told that I could not drive myself home. I cared far more about getting properly diagnosed than the amount of testing. I also had duplicate testing. In some cases, numbers can change, and it was important to monitor my levels regularly. I was also retested due to a higher lever of false negatives or positives for some tests. When dealing with immunity issues, that is not uncommon. One test was a blood draw into a glass bottle from each arm, with the test being done twice--one with the left arm draw, one with the right arm draw--just for accuracy.
I am very comfortable communicating with my docs, and get all of my questions answered. I can email my docs with any questions or concerns that come up after my appointment and will get a response the same day. Do you have a way to easily communicate with yours? If not find out how best to communicate with them. If you are not comfortable with a doctor, maybe it is better to find a new provider. They must not only be good practitioners, but you must feel comfortable with them. I understand being concerned if blindsided with additional testing, but on the other hand, if it secures a true diagnosis, I would probably welcome it. The only concern I can see would be the cost, which would depend on your level of coverage.
Lastly, try to remember that each specialist will view your case from a different angle. I was sent to a hemotologist who pretty much dismissed the reason I went to him for and focused on another more important issue, which was potentially cancer. The issue was already being addressed by three other doctors, but that got his attention. He was a hemotologist/oncologist (I was unaware he was also an oncologist). He was not wrong by any means, and saw my other issue from a different perspective, contacting the team of doctors already working with me. I was blessed to have so many docs on my team. (As I was leaving his office, I asked, "By the way, about the blood issue...").
Hope all goes well for you.
--As a side note, I had a CT for another issue which happened to catch a mass on my pancreas, which is the possible cancer I refer to above. It was one of the luckiest breaks of my life, because if the mass was malignant, it was caught early. Sometimes things happen for a reason.
Blogs & Forums
