View Full Version : Been here before....

10-30-2011, 07:24 PM
Hi My name is Tabatha. I have recently turned 41. I was diagnosed in 2002. Since that time, I have gone thru a series of doctors. My concern is I have been diagnosed as having Lupus by positive ANA and other tests. I have some symptoms, such a chronic fatigue, swelling of joints, legs, hands and feet. Chronic pain and deep depression. I have no signs of organ failure, including heart and kidneys, I only get a very light rash on my cheeks from time to time. But, I do have the headaches, dizziness, sleeplessness, or sleeping for long periods and fever for no reason. Getting to the point, I am frustrated because I do not have more obvious symptoms I am brushed off. But living with this disease has been a nightmare! Including loosing my job after 10 + years. Due to being out of the business due to illness. Now I have applied for disability because my symptoms are overwhelming at times. I was denied because of the legnth of time I was employed! (Huh?) Please tell me I am not crazy! .

10-30-2011, 10:16 PM
your not crazy tabatha all of us have been through the same things with doctors and other people we have people who have been diagnosed with blood results and some that are still waiting and frustrated we all have different symptoms some obvious some not so obvious have you been to see rheumotogist yet. my advice to you is to get a diary and write down every symptom and any questions you have for the doctors it helps so you do not forget anything i am so sorry you are going through this i have been there doctors and people thinking i was crazy but it is your body and you are the only one who knows somethings wrong i am 46 and i was diagnosed 4 years ago i am on prednisone and plaquenil and mexotrexate. just remember there are lots of different auto immune diseases and different types of lupus we are here to support you as much as we can to answer questions or just for a shoulder to cry on. sending you hugs from sydney australia. ps sorry i had to leave chatroom earlier but had appointment look forward to chatting to soon and again welcome to our whl family.

10-31-2011, 05:21 PM
You are not crazy. Fortunately I am still able to hold a job but even though my symptoms are not effecting my organs either I am tired of being tired, dizzy, etc. Please keep your chin up. We are all here and we look forward to chatting with you.

11-03-2011, 05:09 PM
Tabatha, it is harder to get doctors to listen to you when you have kind of vague symptoms that they can't see on an x-ray or lab test. If you feel like your rheumy isn't listening to you, maybe it's time to check around for someone who will be more receptive. My experience has been that there ARE doctors who will treat you based on symptoms, especially if you have already been diagnosed. The good ones understand that preventing organ damage is important, and will pay attention to you, especially if you aren't able to work because of it. Are you on any meds now?

11-08-2011, 10:27 PM

I will echo what everyone else is telling you: you are NOT crazy. I'm one of those "weirdos" who are ANA negative although everything else (and then some, lol) is positive. My previous doc was good but was WAY too hung up on ANA; if you look at some of my earlier posts you'll find the ones where I rave about my new rheumy and her telling me, "I don't treat lab results, I treat the patient". I LOVE this woman! Hang in there and if you don't feel comfortable, or feel like your doc is not "hearing" you, then look around for another one. There's a thread on here where we all talked about where we were and who our docs are; that might help you also. And as far as your rash: don't sweat the small stuff. My rash comes and goes; it's always there, usually light, until I flare and then it gets worse. But if you were to see me when I'm not flaring you might just think it's a bad makeup job (and yes, I actually had an intern say that to me, lol). I agree with above posts about keeping a diary - it can really help.
Hang in there and hope to talk to you more,