My family doctor has diagnosed me with Lupus. She did over a year ago. Because she knows my history and everything that has ever happened to me. She also said she treats symptoms NOT test results.
My rheumy believes 'something' is going on, but because I have never had the butterfly rash, I don't have Lupus. However, this last round of blood work came back with more inflammation than I have ever had show up on blood work AND my skin biopsy came back as concurrent symptoms of Lupus.
My BFF who used to be an ICU nurse says I have Lupus and is trying to help me find a new rheumy.
Who the heck am I supposed to believe? I'm starting to believe it's all in my head, that I making it up, that I'm crazy, and I just want to quit taking all the meds I'm on right now and quit seeing ANY doctor.
Jenn, I totally get what you're saying. It is so tempting to say "the heck with everything!" I agree with your PCP. Lupus or any other autoimmune for that matter, can be sooo difficult to diagnose and go undiagnosed and untreated for too many years simply because the dr.'s don't have the knowledge/tests to "sniff" it out. Your PCP is so right to treat your symptoms and to rely on your history. Keep looking for a rheumy that will work with you and you feel comfortable with. Plenty of us have dealt with thinking everything is just in our heads. We understand that frustration. But YOU know it isn't in your head! Don't give up :)
A lupus rash is NOT visible on every person and that has to be one of the most stupid reasons I have ever heard for saying someone doesn't have a disease. I have a barely visible rash and only after being outside for a very long period of time. In fact, I don't know that I would even say I have a rash, but I definitely have lupus. I think it's only about 75% of lupus patients that have the rash in the first place.
Definitely keep taking your meds and find a new Rhuemy ASAP and get rid of this quack.
There are many different autoimmune diseases of which lupus is only one. There are numerous criteria that need to be met before a definitive dx of lupus is given. In many cases it takes years for the full picture to evolve. Less than 50% have the malar rash so that is not the reason for your doctor withholding this dx - more clues are probably in your labwork as different antibodies will show up in addition to inflammation. Very frustrating to not yet have a name for your illness but better than having an incorrect diagnosis
Never had a rash. All I had was a red spot on my upper lip. When biopsied it was Discoid Lupus. And I had an ugly dry scale on my nose. Both went away when I started on plaquenil.
I don't know why some rheumy's are so afraid to make a diagnosis. Maybe it's to keep up their stats????
When you go for a new rheumy make sure he/she is in her early 40s or 50s. I work better with older doctors that are not spooked with a sick person in their office.
Don't let the doctor drive you crazy. You can always put in a complaint to someone.
I'm so sorry that you're going through this. I know it well. Be real assertive. It will work out. Maybe you're on a quest for a "great" doctor.
Don't stress so much about what they call it.....you have autoimmune and thing to ask will they treat it the same....which answer most likely be yes.
Funny how you PCP said she treats by symptoms not tests.....replacement PCP after mine got sick said i do not have SLE...last test ANA was negative lol! that was all he based it on....he did not know that i have had for over 30 years and ANA goes back and forth or how i was diagnosed.
So amused me how yours does it opposite..made me chuckle...at least yours sounds like she cares.
BUT she should have sent you to Rheum before stating since there are so many autoimmune diseases very similar to SLE.
I just hope they did not pile on the meds and most of all did not put you on prednisone immediately. It should be used only when severely ill...like hospital.
I hope this helps you to calm down and not worry so much about the name ....you have one kind and you may have two or more like me and many others. Gets weird..i know.
Good luck and try your best to not worry and just roll with it ....but try to be on less pills as possible. Hats and sunscreen now too all time!
I do agree with many of the above. lupus has to be confirmed not only by malar rash and there are 11 indicators to my knowledge. I have seen 9 doctors before
this rheumy, whom we are comfortable.
Google could be your best guide than some doctors.
wish you to have better doc.
my pcp is also the one who diagnosed me with lupus. I have been to two rheumy's so far, neither have suggested lupus. the first one just piled on the drugs to see what would help with my symptoms. and of course blood work. I'm new to all of this and it is very overwhelming. I have several tests confirming an autoimmune problem. first rheumy said RA second rheumy says fibromyalgia. I don't know, don't care. I just want to be able to function and have less pain and headaches. I hate medicine. Always have. Prednisone was the worst. Now the only thing I'm taking in addition to vitamins is saveilla and it doesn't seem to be helping. I hate this and just try to focus on trying to have fun and stay busy. If I stop I cant move without extreme pain.
I have been down that road. It is so frustrating. You question doctors and yourself. I would give you a big hug and just say lets not focus on the name but can that doctor help you feel better?
I recently had to change all my dr due to insurance changes. She said the most amazing thing to me: “We don’t treat the lab work we treat the patient. So what do you think you need to feel better?” This is the second doctor that talk to me like that. I finally was able to identify what I am looking for in a doctor. Belief. I want them to believe that I don’t feel right and help me know my choices and walk with me down the path.
Does it really matter what each of them want to call the series of things that destroy our life? Or just can they be the doctor to help us?
In one year I saw three different Rheumy’s. #1 Seronegative Spondylitis (RA of the spine) #2 nothing is wrong with you at all. #3 finally got Lupus dx, confirmed Sjogren’s by symptoms and what helps. Also dx Mixed Connective Tissue Disease which explained my scoliosis. I stuck with number 3.
Sounds quite similar your story with mine. Many drs. I heard saying the same words, "I know there is something wrong with you, I just don't know what". Went to Cleveland Clinic, Mayo Clinic, and it was not until I went to a nearby College of Medicine's Clinic that a professor looked and me and on the spot knew what was wrong. I'll say, find any University around you that has a teaching clinic where their professors see patients. I pray you find a good dr. as I did.
I am a patient but also a nurse. Doctors have to look at the overall picture. Everyone is different and can present differently. I was always taught to look at the patient first. Look at how they look, act, and look at symptoms. Look at moniters and x-rays and labs next. You have to put it all together. A doctor may end up treating symptoms but they shouldn't without trying to figure out what is causing the symptoms. Motrin or Tylenol will bring a fever down but not get rid of what caused the fever in the first place. And if your doctor acts like they don't care, they may not, so find one that does.
While I certainly agree with what Poobie said, I don't believe that you should give up trying to find the right answer. What I do disagree with is that labwork is not the only way to diagnose lupus. Mine was diagnosed through a biopsy, which would not have been ordered had my nephrologist not put together the puzzle pieces. Uncontrollable BP, high proteinuria, severe anemia and several others.
At that point my PCP had wanted to send me to UCLA. Thankfully (I know it sounds silly) but I had2 TIA's and a stroke before I went.
My point is that you are going to need to search for that one doctor that is willing to look at more than lab work, especially as our changes so often. I do hope it in not lupus, but there are so many symptoms that disregarding a diagnosis because of one is just laziness.
Please read the post that JC put up...the letter to patients from doctors. It makes a lot of sense. If you are aware of what the possible symptoms are of autoimmune diseases then when you share it with the doctor, they can begin to treat the correct one.
Big hugs,
DeAnne
poobie said:
There are many different autoimmune diseases of which lupus is only one. There are numerous criteria that need to be met before a definitive dx of lupus is given. In many cases it takes years for the full picture to evolve. Less than 50% have the malar rash so that is not the reason for your doctor withholding this dx - more clues are probably in your labwork as different antibodies will show up in addition to inflammation. Very frustrating to not yet have a name for your illness but better than having an incorrect diagnosis
Please don't suddenly stop taking meds, ever. If you stop a med, wean off it slowly, because you will otherwise probably have horrible withdrawals and get very sick. I have seen it happen.
The rash is not a "requirement." and neither is a positive ANA test (the other reason some doctors say "you don't have lupus.") Some doctors just don't like to give out a lupus diagnosis. I'm hearing that more and more over the last couple years. I wish I knew why. How can you move on and tackle your issue if no one will pin it down for you?
It happens so much to people, leaving them bewildered and doubting themselves, and not knowing what to do. It makes me mad, actually, to see patients getting the runaround like this. It's like the doctors either don't know or are ignoring the basic guidelines for diagnosing lupus (having 4 or more of the 11 classic symptoms). Here is a blog post I wrote about people getting "undiagnosed" with lupus and"rediagnosed" with something else, like Sjogrens or MCTD http://www.lupusandhumor.blogspot.com/2011/09/sjogrens-vs-lupus-smackdown.html
I am SO on board with what you said. I want a doctor who will listen to me and treat my symptoms, not be so tied to the labwork that I don’t get the help I need. I want a doctor who will believe me about the way I feel. Wish I could see your doctor. Thank you for sharing.
Tanya said:
I have been down that road. It is so frustrating. You question doctors and yourself. I would give you a big hug and just say lets not focus on the name but can that doctor help you feel better?
I recently had to change all my dr due to insurance changes. She said the most amazing thing to me: “We don’t treat the lab work we treat the patient. So what do you think you need to feel better?” This is the second doctor that talk to me like that. I finally was able to identify what I am looking for in a doctor. Belief. I want them to believe that I don’t feel right and help me know my choices and walk with me down the path. Does it really matter what each of them want to call the series of things that destroy our life? Or just can they be the doctor to help us?
I can't thank you enough for your replies! My rheumy is supposed to call today after reviewing the skin biopsy results from the dermatologist (which the conclusion was concurrent with Lupus).
I literally slept this entire weekend. I NEVER sleep this much. I think it's just pure exhaustion from poking and prodding and emotions. I do have an appointment scheduled with my PCP this week so that I can go over all of these results with her and see what the next step is.
I also have decided to meet with a Naturopath. (My Mom's). I figured at this stage, what do I have to lose? I'm already tired of the medicines, tired of the specialists and the him hawing around a dx.
It's SOO nice to know I'm not alone in these feelings.
I can't thank you enough for your replies! My rheumy is supposed to call today after reviewing the skin biopsy results from the dermatologist (which the conclusion was concurrent with Lupus).
I literally slept this entire weekend. I NEVER sleep this much. I think it's just pure exhaustion from poking and prodding and emotions. I do have an appointment scheduled with my PCP this week so that I can go over all of these results with her and see what the next step is.
I also have decided to meet with a Naturopath. (My Mom's). I figured at this stage, what do I have to lose? I'm already tired of the medicines, tired of the specialists and the him hawing around a dx.
It's SOO nice to know I'm not alone in these feelings.