View Full Version : Doctor troubles

07-19-2008, 11:42 PM
I was diagnosed at 21 , and i'm 26 I still yet to find one doctor who can truely diagnose me and give me helpful living tips to deal with this mess. I'm on no medication but I try to use vitamin supplements for energy, sleeping pills , and to flat out deal with the pain ( cause tylenol every day would suck. )

Is their anyone out their who has taken a long time to be diagnosed or find a doctor. 3 doctors now have messed around on my charts.

the first doctor diagnosed me , I have discord Lupus, 2 other doctors says no symptoms of nothing i'm making my problems up. 4th doctor after 1 look said I probably have SLE. I know i have transitioned to SLE but nobody believes me and its hard trying to doctor myself.

07-20-2008, 04:23 AM
Hi Jcitychic
I hear where you are coming from. I am going to be 50 in December and I finally got diagnosed at the age of 36. I was in my early 20's when I started going to doctors, because I was very very ill from the Lupus symptoms and none of the doctors I saw would listen to me and they treated me like I was a hypochondriac and a worry wort. It was terrible. I got so fed up that I refused to go to a doctor until I was 36 years old. I had gotten the Chickenpox at the age of 35 and boy after that my health went right down hill. I nearly died before I finally got diagnosed and put on medication. I guess what I am trying to say is that you can not let this illness get out of control, because it could kill you. You need to get into see a good Rheumatologist as soon as possible. You have the right to ask the doctor you are seeing for a referral to a Rheumatologist. You also have the right to demand that the doctor order all the tests they can think of to test for Lupus. You see you are paying them for their services and you can tell them that if they do not want to do what you want them to do for you, then you are not going to pay them as they are not performing their services. This is what I had to do to get the doctors attention. I got tested and sent immediately to a Rheumatologist who told me that I have the most classic case of SLE Lupus that he had seen in years. I started to get treated and am doing ok. I hope that you can get into see a Rheumatologist as soon as possible. Do not take a pile of Tylenol as that can destroy your liver big time. There will be other folks who post in here that are great and they will have more information for you. Welcome to the site and keep us posted on what is happening ok.

God Bless,

07-20-2008, 06:42 AM
SO many on this board have experienced "wheel 'o' docs" before finding a rheumatologist who will listen and work with them!

Keep looking until you find someone who will listen and pay attention to what you say. While waiting, treat your pain gently - mild exercise can help, as can eating a healthy diet that is low in inflamatory foods (fats, meats, alcohol) and high in fiber, grains, fruits and vegetables and good oils (nuts, olive oil).

I do take pain meds when I hurt - though I've been lucky, and have been off the prescription ones for some time. I alternate between (generic) tylenol, ibuprofen and aleve. I find that treating pain when it does creep into my life gives me more energy and a better quality of life.

Welcome to our fold, jcitychick, we're a supportive bunch who laugh, cry and learn together ~


07-21-2008, 01:09 AM
Hi jcitychic,

You are definitely not alone in your Dr. problems and lack of a proper diagnosis. I think just about every person here has had, or is having these problems. Don't let anyone tell you "it's all in your head", because it's not. Learn as much as you can about Lupus and the various treatments available. Most importantly- be persistent. Don't be afraid to get a second or even third opinion. You mentioned you are not on any meds. Something you can do for yourself right now that's safe, and effective, is to stay out of the sun, and use plenty of sunscreen. Wear a hat. A lightweight comfortable shirt with sleeves to cover your arms helps too. For pain from inflammation, I take naproxen, which is a prescription version of Aleve. When you do see your Dr. next, ask if this is something you could take. It can be hard on your stomach, and has to be taken with food though. Check with your Dr. first. You know your own body, and you know when it's telling you something is wrong, trust that, and keep up with Dr. appointments, and second opinions until you get a proper diagnosis and a plan for treating your disease. Hang in there, and don't be afraid to come here and talk, vent, or whatever you need. There are many people here like you, who understand. Let us know how it goes.