Well I was diagnosed based on symptoms on the tenth and undiagnosed today based on bloodwork. I am so confused. I saw the NP today and I don’t really think it’s fair that she undiagnosed me. I want to talk to my rheumatologist. Oh and she took me off the only thing that has began to touch my pain. My prednisone. Yep by this weekend I will be in full blown flare again with no relief in sight. Because the 5mg twice a day didn’t make me feel like a brand new person she now thinks it’s not even autoimmune. I guess my butterfly really is just decoration from God. And my sun rashes mean nothing too. I know I should be happy to not have a chronic illness but I am not because now once again there is nothing wrong with me.
Amber,
First of all I am sorry you had to experience that. Secondly, if you like your Rheumy, stay with him but demand that you will never see her again. If you dont, find another one immediately. Do you have a good primary? Maybe he will agree the prednisone was working, probably just not a HIGH enough dose to make you feel like a brand new person. I am not a doctor, but I am a 20 year old profoundly educated on several auto-immune illnesses. I myself have a very hard one to diagnose....probably Lupus. I have a B.A., and have worked with several doctors, only until recently did I start to lose my memory and become in a fog. So get up Amber, and pick one above, YOU are your only best advocate...go fight. Also, get a friend or relative to be your advocate for when you are in bad shape and take him/her with you to every appointment. Get and keep copies of every blood work, notes, diagnose, notes from last visit....from every doctor...you are your own best advocate..soon you will have 10-15 doctors...you need to know things!!! Best of luck...Deb
WOW, been there, way too many times, that I almost have given up looking for help! SAD, but so true…It is sickening, now how long exactly have u been known to have Autoimmune? What changed w/ ur bloodwork?? Listen, u know something is wrong, so keep going to whomever u must till u find help & answers…U know it is something that is causing you to hurt & your whole life to change cause of it, so what r they gonna do, just let u live like this? That is insane! Do NOT let them get u down, we have all been there, this really is one of the most mysterious illnesses I have ever heard of and even harder to diagnose…Misdiagnosis, my friend, that is what is happening to u, U are the victim!! …Keep looking, keep trying, and I am so sorry that now u have been taken off the pred, the only thing to help u…I don’t know what to say other than I am so sorry about this! Stay Strong & keep ur head up!! As hard as it is, u must stay strong!! Suzie :0)
welcome to the frustration otherwise known as Lupus. This is one of the most frustrating aspects of this disease. I think i heard the docs at the Lupus Foundation were trying to change the “markers” because the old info was out of date and not very helpful…for reasons like you just describes. I have a rheumy who said she didn’t really believe in lupus, but she treats me and helps me, so…i say, what;s in a name…for now. it still is crazy. do you have other doc options?
You really shoud talk to your rheumatologist. I can't imagine that a NP (Nurse Practioner?) can truly diagnose lupus!?
Some of my tests were "under the radar" for years. I had all kinds of symptons and never even thought about going to a doctor, like hives in the summer-time and allergic to just about everything.
You might even have some other autoimmune disease. Don't give up.
don’t let the other’s ignorance make you doubt what you know is going on with your own body
oh and make sure you keep a journal or symptoms with dates and doc etc.
What kind of doctor can diagnose systemic lupus?
If multiple criteria are present simultaneously, the diagnosis may be made by any physician (Family Practitioner, Internist, or Pediatrician). If however, as is often the case, symptoms develop gradually over time, the diagnosis may not be as obvious and consultation with a rheumatologist may be needed.
Where is the BEST place to go for diagnosis and treatment of lupus?
There is no one single recognized center of excellence for the treatment and diagnosis of lupus in the United States today. The Lupus Foundation of America has no mechanism by which it can rate either hospitals or physicians. The general recommendation is to find a physician that is affiliated with a medical school -- a university hospital for example. These health care institutions may have faculty on staff who are involved in lupus research, and are generally the most up-to-date on the latest advances in diagnosis and treatment of lupus. These are generally regarded as very good places to go for the diagnosis and treatment of lupus. Certainly the health care institutions with established reputations fit this description.
Well after one day on 2.5 mg of prednisone, I was unable to get out of bed. I called and they restarted me on my 10 mg. The only thing I hate is I am not getting anything but more tests to rule out seronegative Ra and sleep apnea. I want a medicine that will give me some maitenance w/o the steroids. I am going to keep jumping thru their hoops til we get it right.
janice said:
What kind of doctor can diagnose systemic lupus?
If multiple criteria are present simultaneously, the diagnosis may be made by any physician (Family Practitioner, Internist, or Pediatrician). If however, as is often the case, symptoms develop gradually over time, the diagnosis may not be as obvious and consultation with a rheumatologist may be needed.Where is the BEST place to go for diagnosis and treatment of lupus?
There is no one single recognized center of excellence for the treatment and diagnosis of lupus in the United States today. The Lupus Foundation of America has no mechanism by which it can rate either hospitals or physicians. The general recommendation is to find a physician that is affiliated with a medical school – a university hospital for example. These health care institutions may have faculty on staff who are involved in lupus research, and are generally the most up-to-date on the latest advances in diagnosis and treatment of lupus. These are generally regarded as very good places to go for the diagnosis and treatment of lupus. Certainly the health care institutions with established reputations fit this description.
i am so glad they gave you the medicine—i too can’t move without it…keep fighting for your rights too…i had to do battle this morning and am still shaken, but happy I fought a good fight for a good cause
Go see your rheumatologist, lab results will change and can also be misread. You have to be your own advocate, symptoms do not lie. I was told a year ago that even though I was ANA positive with Lupus symptoms, that it was not Lupus, simply an undetermined autoimmune disorder (because Lupus is rarely seen in men) and told to take NSAIDs and avoid the sun. A couple of months ago (and several horrific flare ups later) I sought out a different rheumatologist who ran extensive bloodwork on me and I am now being treated with 400mg Plaquenil daily, still avoiding the heat and sunlight, and trying to manage my pain w/NSAIDs. If it walks like duck, and quacks like a duck, treat it as such.