Hi all. I'm new around here. I'm 26 and living in S Fla. I grew up in MD, and was diagnosed at 14/15 with Lyme's Disease, without ever having a positive test result (back then, and even now, they results are notoriously bad). Well, I went in to the doctor for a sinus infection and they ran blood work. Two days later this was the phone call I received "Your ANA levels are extremely high. It's impertinent that you see a rhumotologist (sp?) as soon as possible. We'll call you in the morning with the doctors information". The lovely *ahem* lady on the other end of the phone couldn't tell me what an ANA level was AT ALL.

Well, after I freaked out and did a little research, I've come to realize that this is the first indicator for Lupus (along with a few other auto-immune diseases). I'm a little more stable now. My rhumowhatever appointment is on Friday. In my research I've found that out of the 11 things the doctors look for, I have 5 that are consistent, and 2 that show up every now and then. I'm also finding that the symptoms (that I suffer from) are similar between Lupus and Lyme's (hair loss, extreme joint pain, chronic headaches, unexplained fevers, swollen glands, depression, loss of memory/short term memory, chronic fatigue, Pleurisy, etc). There are also 4 women in my family in the last 2 generations that had Lupus (I just found this out last week).

So, now that I've talked myself into having Lupus (yes I know I shouldn't diagnose myself but I'm only human). What do I have to look forward too? What tests will the Rhumowhatever perform? Is there anything I should bring with me to the appointment? A list of symptoms perhaps? Are the tests reliable? Is there another type of doctor I need to push to see? Any other information that you would have found helpful at this stage had you known it?

TIA
Meg

Megs,

If you can exercise any choice of WHICH rheumatologist to see, it's good to try. Look for one who has a strong interest in lupus (just in case...), not just in arthritis, etc. I live in a major metro area and wish I'd had the brains to go 25 long miles ( :rolleyes: ) to one of the teaching hospital rheumatologists known to excel in lupus.

I've seen in area bookstores (major chains esp.) a paperback compendium that lists doctors by specialty. Doctors are "nominated" by other doctors, and those getting the most votes are listed. Maybe there's a such a book for S. Florida?

Expect more bloodwork to be done. And a really thorough medical history, back as far as you can remember.

I also had symptoms back to childhood & lots of pain in my teenage years and I was also (mis)diagnosed with Lyme in my early 40's. So I understand pretty well how frustrating it is to have unresolved symptoms. I hope you do NOT have lupus---but if you *might*, I'd want the best possible dr. around if I were you.

Best wishes to you, from Vee