Hi all. Is anyone else out there worrying that the insurance co. will drop you? My pcp laid some disturbing advice on me last week and I'm feeling concerned. The situation is, I need to see an immunologist to verify some things for me and my pcp that only an experienced immunologist can do. But those will be expensive tests. It's been a little over a year of many different expensive tests ran by rheumatology, hematology, etc...now. My pcp tells me that if I absolutely need to, to just go ahead and make an appt with the immunologist, but if I can wait, it may be a good idea to do so. She told me about people getting dropped from their insurance because of things like this and she's concerned it could happen to me.
I have heard of that happening to patients once they were dxed, but not in the process of finding one. So I'm wondering how worried should I be about it? I'd like to get a dx of this rare complement deficiency type disease they think I have if indeed I have it...there are treatments specific for it and if it's causing my problem swallowing and other symptoms, I'd love to take something that will get rid of these problems. Nothing we've tried so far has helped really.
I hope that came out clear...I'm having trouble getting my thoughts out properly and being clear. If I don't have the deficiency, then great...but if so, and it's causing this pain, I'd love to try the specific treatments for it. From what I understand, an immunologist that has treated patients with this is the only qualified specialist there is for dxing and treatment. The docs are surprised the rheumy found it to start with...but aren't sure that's definitely it. My pcp strongly suspects I have Lupus and Sjogren's but wonders, if there is a deficiency, then it could be creating the lupus/sjogren's or vise versa. She also wonders if this is Lupus and the deficiency. ugh...it's so mind twisting. One way or the other, we've got to find out if this deficiency does indeed exist.
I don't know what to do. I was all excited about setting up an appt with such a specialist and maybe solving mysteries and getting treatment...but now, I'm of course worried my ins. will drop me. I have an appt with a neuro next week and a GI doc in september... adding the immunologist makes me worry that will topple things over with the ins. company. I'm already worrying about the appts I have scheduled. Thoughts, ideas, advice?