Hi there, I have interstitial cystitis and think I might have lupus also. I have had IC for almost 20 years. I was diagnosed with a hydrodistention and cystososcopy under anesthesia. They don't do that much anymore. IC is mostly a diagnosis of exclusion these days. Here is a good article that talks about the diagnosis and treatment: http://interstitial-cystitis-diet.blogspot.com/2011/03/aua-guidelin.... I watch my diet and take Atarax and a few supplements.
How did you get diagnosed with Lupus? What are your symptoms? I don't seem to have the sun exposure problems, but joint pain and general aches and pains. Like right now, I just got up to get a drink, and I could barely walk. :( Thank you for your help.
Edit: I just read some of the responses. (Sorry, I am new to these boards.) Are you looking for an IC doctor? There is a good list of IC doctors on the IC Network: http://www.ic-network.com/md/ If anyone else has questions about IC, I got pretty smart fast about it. That is why I was looking for a message board for lupus and possibly fibro. I figured I could learn about it from other patients like I did IC. So many times the doctors just don't have time to answer questions.
Have those links off "Sassykat" helped you?...in due time we always get a member of few come along who have had the same issue and it does'nt half help at looking at issues in a better light.
Thanks Sassykat for the info! Very helpful! As far as my diagnosis, I went to my doctor with my symptoms, joint pain, fevers, weight gain, high blood pressure, stomach problems, urinary pain, extreme fatigue, bruising, palpitations, shortness of breath, and finally the constant body pains . I also was getting splotches on my face which I thought was eczema. She examined me, and ran batteries of tests on me. She told me she suspected autoimmune disease, but She said I needed a rheumatologist to diagnose me. Once I saw my rheumatologist and showed him the test she did, he did the tests over, and concluded that I have Lupus. He started treatment for me with Plaquenil. I started noticing the sun was bothering me last year in the summer. I get really tired after sun exposure, and if the sun hits my skin, it will start to itch or tingle.
Camero86, that is good that it hasn't bothered you since you were pregnant. I didn't have problems until I was 38. (53 now). I think my bladder has always been fragile though. Thank you for the welcome, by the way, everyone. :-)
My ANA is high..............I can't access my labs right now to post the differentials. Cleveland Clinic must be working on their website. I will post the numbers later. I have been worried that this might be multiple sclerosis also. Crazy that the doctors don't agree on what it is all about.