I will first off apologize if I have posted this in the wrong forum and trust I have not offending anyone, but I am really looking for some help.....
My story is long.....short version (well sort of) began with .....dizziness, lightheaded, nausea, started 13 months ago, tons of allergy and inner ear tests, sinus scans (can back normal)....then began the occassional night sweats, and twice borderline anemia (2x in the past 12 months), now I am absolutely exhausted. Well a couple of months ago they discovered a mass in my Nasopharyneal region (back of nose, adenoid area), the MRI said suspected Lymphoma, so I was sent to an ENT, he said upon using a nasal scope, it wasn't Lymphoma, but rather a Nasopharyneal carcinoma cancer and immediately biopsied it and began preparing me for radiation/chemo. Well he was truly surprised when it came back benign for Carcinoma, but enlarged adenoid, lymph tissue in my nasal region with is really RARE in adults...and very large. He then said, well maybe it WAS a lymphoma (which he never bothered to test in the first place because he was sure it was a carcinoma) arrgg!! So back in for surgery, this time he removed the entire mass and sent it to pathology. The inital results came back with reactive cells, but inconclusive so further test are being done (the doctor said that it definately wasn't NHL, but perhaps HL, but he felt really positive about the initial pathology). In the interm I had a neck scan with contrast with showed 14 enlarged, but only borderline enlarged lymph nodes (1 cm - 1.5 cm). I have been to a few message boards of people that have had negative results on a few occasions and then a year or two later a positive....when they are all ready in IVA, this scares me. Have any of you had initial test come back negative but then in the future received a positive? I ask only because, I have been bounced from doctor to doctor like a hot potato (9 in fact) in the past year and no one has followed my case from day one and I feel I have to be the aggressive one in getting a diagnosis. If you did have difficulties getting a diagnosis, what did you do, were there certain test you demanded....any suggestions? Personally I want a node in my neck biopsied, and a Cat scan done of my chest, abdomin and groin region....I'm so fustrated, there is something wrong and I want help and a treatment plan. (I've been tested for diabetes, thyroid and other disorders, all fine, I do have elevated liver enezymes, but again only slightly) Thanks for any input! Also I am NOT one who generally worries about aches and pains, in fact I am very tough, and have been through other health issue just fine.....but now I just feel so TERRIBLE and I am afraid they will miss something because of I have read SO much about missed diagnosising.