Lupus?

[katygirl]

Does anyone mind sharing with me your experience with lupus? I have been having hair loss issues for almost a year now, really two MAJOR shedding periods, one in the fall and then it got better and one right now. I have been having kind of weird headaches that go along with it. I kind of stumbled upon these symptoms and the lupus connection through a google search. I had an ANA test the other day and it came back as a possible positive. I am going to call today to make an appt with a Rheumatologist. I do have some other symptoms (Raynaud's phenomenon, exhaustion-who isn't right?!?) but not really the obvious which is painful joints. In fact physically I feel better than I have in a while, I'm working out 5 times a week which is helping with the exhaustion. A postive ANA doesn't mean for sure that I HAVE lupus but it might.

Does anyone have any first hand experience, if you wouldn't mind posting or PMing me I would be very grateful! Are there meds you are on? Do you take them daily? I know I will have a million questions for the rheumatologist but thought I would start here.

Thanks all!

[lindrusso]

Don't have lupus and I'm not a doctor but have they checked your thyroid? Hair loss and exhaustion can be symptoms of hypothyroidism.

I was tested for lupus many years ago (mostly because of joint pain) and from what I've read, it can be tricky to diagnose, so I'd want to rule out some more obvious things first if I were you.

Good luck and I hope you get good news.

[katygirl]

Yes, they did a whole throid screening and everything was fine. It was done in the fall after my first bout with hair loss, It might not be a bad idea to ask them to do it again though..

Thanks for your advice!

[Robyn1007]

Ugh, autoimmune disorders are notoriously hard to diagnose because their symptoms vary so much from patient to patient. While Lupus is a possibility the other that I thought of is Chronic Fatigue Syndrome. Good luck! I hope you are able to get some relief soon.

[katygirl]

Ugh, autoimmune disorders are notoriously hard to diagnose because their symptoms vary so much from patient to patient. While Lupus is a possibility the other that I thought of is Chronic Fatigue Syndrome. Good luck! I hope you are able to get some relief soon.

Thanks Robyn, and yeah, just from the internet research I've done I see that it's not easy at ALL to diagnosse!

By the way, speaking of being tired...congratulations on all your races and your amazingly active lifestyle! You motivate me :)