I am a suspect for Lupus. But I haven't had it checked since I was 18 years old. For the moment the say I have an "autoimmune disorder of unknown origins." At the time that I went to the specialist he said that I was one symptom away from being diagnosed with Lupus. He explained that it is hard to diagnose and can take years. He wanted to start me on steroids which I refused. I have had increased fatigue since having the baby. I have trouble with my joins, especially my hand, I keep getting pancreantitis, and more. I really don't know much about Lupus, but what I wanted to know is - What are your symptoms? Should I go get checked again or am I waiting for something to happen?
The other problem I have is that I need to change family doctors but I don't know how. My mother has a history of mental illness and is in and out of the mental hospital. All growing up this doctor seems to have just been waiting for me to follow in her footsteps or something. If there's no clear cut explaination of what is wrong with me she always calls it psychosymatic. I am not my mother and I do not share her psychiatric problems. Even when they find something wrong sometimes she explains it away saying that your mind can cause physical ailments, for example: pancreantitis. Now I'm afraid to go to her about the problems I'm having. I feel like I want to go somewhere else. She has been my doctor since I was a little girl and she was the one who found that I got pancreantitis when I was 15. They never have found an explaination for it. It was while I was in the hospital with pancreantitis that they diagnosed me with PCOS. Nobody ever did anything about that either. When I was a little girl they diagnosed me as manic depressive, which I am not. I don't mean to sound like a person in denial, but I really don't have major ups and downs. I was depressed as a child but that was because I had an abusive mother who was in and out of the mental hospital. I was consumed with feelings of guilt about wishing she would really just kill herself. She would hurt me and if I told my grandmother would cover for her, so I quit telling. My grandmother adopted me and we had a weird family structure. My mom would get mad at my grandmother and wisk me away in the middle of the night to go God knows where. She'd say all sorts of bad things about my grandmother and tell me I was never going to see her again. If I cried about that she would spank me. On top of what was going on in my family life, my childhood social life was a wreck. I had problems with my bladder and had a couple of operations to correct it. I wet my pants clear through Jr. High School. I wet my pants on my first date when I was 15. By then I was a pro at hiding it, thank goodness, and the guy never knew. Trust me though, there were plenty of times in my life that there was no way to hide it. Can you imagine how the kids tormented me. Then to make matters worse, my grandmother dressed me in frilly dresses through 7th grade. She kept my hair in Shirley Temple curls. The other kids had a field day with me. I wasn't manic depressive I was being tortured! I truely had good reason to be unhappy. In 8th grade they sent me away to boarding school and I owe my life to that I think. The other kids took me under their wing and taught me how to dress, shave, wear makeup, fix my hair, etc. Around 9th grade my bladder had healed and I had done kegals until I could control my bladder, most of the time.
Anyway, the point of that big long story is that I feel like I have an unfair mark on my record that might make a doctor dismiss me. The specialist I went to when I was 18 didn't dismiss me when I explained everything to him. I have this terrible fear of being thought of as crazy. I want to get help for the problems I am having, but am too afraid to say anything.
I feel like I have an unfair mark on my record that might make a doctor dismiss me. I have this terrible fear of being thought of as crazy. I want to get help for the problems I am having, but am too afraid to say anything. What should I do?
I can really relate to you here. Have you had a recent ANA blood panel done?
That could be a start. I am so sorry for all that you have endured. All I can tell you is to be proactive! I am still working on getting some tests done, but have to go slow. Anyway, I think the way we feel and trying to get answers whether to our physical or emotional problems-makes us crazy in itself, and I don't mean a sick crazy, but yes, crazy/frustrated...I would suggest seing an endo, I cannot wait until I finally see the new one in a few weeks, I am not done yet...
Wishing you the best! Hang in there, we're here for you.
I haven't had one done in almost 10 years. I don't really understand how it works. They explained it to me like it was on some sort of scale. It was positive so there's something wrong, but they don't know what. That is when my Dr. sent me to the specialist I mentionsed. It's been so long now that I can't even remember what kind of specialist he was called. I know when I spilled my guts about my concerns about being called crazy he told me that he didn't think I was crazy and that it was not all in my head. Now I'd like to go back, but I don't even remember his name.
It was positive so there's something wrong, but they don't know what.
Hon, I would urge you, b/c of that statement right there, to seek the guidance of a GOOD endocrinologist, there must be some form of community representative in health that can lead you to a great endocrinologist in your area. I know it can be taxing on the nerves, you're not alone, please let us know how it goes....
Was glad to see your post about Lupus. I was dx about one month ago with it. I was tested for it last year and it did not show any positive readings. I suggest you have another ANA panel. I self dx myself with PCOS several years ago. Finally got a doctor to confirm it several years later.
You should really try to find another doctor, I know what you mean about being labled by a doctor. I would say your concerns are just and again I say try to find another doctor. Something else that keeps coming to me is that so many of these symptoms of PCOS are like to Lupus. Or at least that is what I see in alot of post. The fatigue, memory loss, confusion, achy joints, swollen stomach, etc. Have you ever noticed that?
I am sorry you had such a lousy childhood, but just because your mother has mental problems does not mean you are going to have those same problems. I understand why some would think maybe they did have mental problems. Because before I was dx with lupus, I thought I was going crazy. I would get to the point where I could not function especially on the weekends after a long week of work. I would want to stay in bed and sleep. It was not fair to my daughter or husband. My relationships with them started to suffer. BUt the with dx now it has answered alot of questions I had as to the way I was feeling.
Before I forget it Jamie is a real CUTIE POOTIE!!!! Is that a round baby bed that is in the picture. I have saw those and think they are awesome. I wish they had had those when my daughter was a baby.
Well guess I should close this post for now, if you would like to contact me personally my email address is fryelisa14@aol.com
I, too, have an autoimmune disorder (blood clotting disorder) and tested + for lupus anticoagulant, but do not know if I have lupus. I don't have any of the symptoms for it. Getting a + test for LA doesn't mean that you have it.
__________________ Lean cyster ~ M/c @ 10 wks after seeing heartbeat 8/04, m/c @ about 10 weeks after seeing heartbeat 8-09. 2 chemical PGs lost @ 4.5 wks 1/05 & 3/05. 4/05: Dx w/antiphospholipid antibody syndrome.
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Does anyone have Lupus? 
