So have you ever had this happen? I was originally diagnosed with Undifferentiated Connective Tissue Disease. I changed rheumys (never liked the first one anyway) and new rheumy diagnosed it as Lupus. Switched insurances and new rheumy diagnosed it as UCTD! I am so frustrated with this! I checked the criteria and I do meet the criteria for Lupus. I don't have really severe Lupus and I know this is a blessing. But it is so frustrating to have one person tell you one thing and another tell you something else. I feel like I just want to shake someone!
All I can think is that it is because some of my original symptoms like really bad joint swelling and the malar rash are now gone due to treatment. You don't have to have all of the symptoms at once, you need to have 4 of 11 at some point in the disease. Anyway, I just needed to vent. I know it doesn't really matter anyway. Whatever this is, it feels like crap and I'm tired of it. As usual, any support is much appreciated.
I can understand your frustration. I went to 3 different rheumy's and got 3 different opinions. 1 said that he "strongly suspected Lupus" (and when I quoted his own words back to him several months later he denied ever saying it because "its not in my notes". ) Another said its "just fibro" and most likely my depression was not under control (so I guess I'm just another "hysterical woman") and the last one said I don't have anything because all my tests came back normal. You are totally right, it doesn't matter what its called...it feels like crap and we're tired of it!! Hang in :)
I know exactly how you feel (I actually do). The same exact thing has been happening to me. All I can say is stick it out and try and get an appointment if you start to feel worse (Dont let it go on and assume "thats just life" because internally, your body could be suffering and getting more damaged).
My rhuemy has been writing SLE as my diagnosis, but he tells me that its MCTD/UCTD. He doesnt want to put a label on it yet since I did test positive for sojgerns - although I highly doubt that I have that. But maybe your rheumy is doing the same? Maybe he just is afraid of saying "yep its lupus" just in case he is wrong.
I would just stick it out (at least thats what Im trying to do.) It can take a while for the antibodies to show up in blood work. Has your doctor told you if you tested positive for any of the antibodies? Has he tested you for anti-ro? Or double stranded anti dna? I would ask if I were you. If you tested positive for any of the lupus antibodies then I see no reason why he shouldnt be diagnosing you as lupus, especially with the history of the malar rash.
Anyway at the end of the day, it really doesnt matter what its called - you feel like crap and thats what is important. I am sorry you too are suffering. I know how annoying it can be. I hope you start to feel better very, very soon. :)
Hi Teen, yeah I've been tested for all the antibodies but nothing came back positive, except for the ANA, plus all the physical stuff. Anyway, thanks for listening. I just needed to let out some frustration :-)
Hey Tired Mom, you hang in there, too! Sounds like we're all in the same boat more or less. It sure is discouraging but at least we're not alone :-)
First you need to understand that the criteria floating around is not accepted as an official diagnostic tool, and the ACR will not standardize one. They refuse. The list we’ve all seen was developed for selecting people for a specific study a long time ago, and that’s all it was intended for. It’s fairly broad because of that. No Dr will stand on it, even if they’ve used it, so don’t ever think it will back you up. They always resort to their claim about labs not being evidentiary enough if given the opportunity - including if you had positives and then results changed due to meds reducing your inflammatory marker signs. They’re sneaky that way. I’ve been in that boat.
I suggest you obtain and keep copies of all medical records, and especially from the one that did dx you with Lupus. Keep it in print in your possession.
I am in the exact same boat! My once positive labs recently came back neg. I told the dr that the labs were done when I felt great. She is going to do new ones. I am thankful that my new dr did not reduce treatment but believed my cry of pain and added meds for time being.
I really needed to hear I wasn’t alone. I went into a depression thinking that maybe I was being a baby about the pain and hair loss. (I used to have such a high tolerance.)
Been there- my diagnosis has wavered back and forth several times too and they are more inclined to use UCTD in milder disease However because I nearly died with my last flare none of my doctors will use the UCTD label anymore even though I am currently quiescent.
I absolutely understand I went to many doctors with all kinds of weird symptoms ( my tongue has been numb on the left side for years it turns out it is CNS lupus related). The first Rehumy I went to did a blood test charged me a fortune as he wanted three office visits to read the results together, and then told me that there was nothing wrong with me that the long list of symptoms I brought him was just nothing if it didn’t show on a blood test. So the next doc I went to she did different tests, bone scans, brain spect, etc. and the results showed bone I inflammation and SED rate through the roof etc. she never labeled it as Lupus. It was frustrating because people around me wanted a diagnosis. I said she is treating me and I don’t need a label we are working to see what it really is we suspect it to be lupus. At the end of the day I was just happy she was treating me with her full attention and she did. She was great, i would be dead without her. Once the brain spect cane back, as I was having a major flare with brain involvement then there was no denying it was CNS lupus. You are lucky your lupus is not severe, just be happy you have a great doctor that treats you and make sure to let them know everything that goes on. Maybe when you have a flare up it will be shown as lupus but for now it is fine Don’t worry about the labels. Good luck to you!
So when you are NOT in a flare the specific blood tests can all come back normal?? So why don’t they WAIT until you are in a flare to run those tests???
I am having neurological issues; weird tingling in feet and hands, pain that moves around, some loss of feeling in my hands and hand tremors, which I suspect is CNS lupus related. When I brought this up with the most recent rheumy she said that it didn't count as a lupus symptom unless I had psychosis or a seizure. That's ridiculous in my opinion.
I do have an appointment (in September for God's sake) with a neurologist. Hopefully he will shed some light on this as well. In addition, I have had hematuria (blood in my urine, microscopic) for years. I saw a urologist who suspected it to be lupus related. So it's scary, like I'm in free fall in slow motion. Just waiting for the other shoe to drop so to speak.
Anyway, thanks for all the comments. I especially appreciate those of you who, like me, are in this weird state of limbo. I hope we all can find some peace and comfort knowing that we are not alone. I really don't know what I'd do with out you all.
That's helpful to know although she sited the criteria as if it was official. Also there is newer criteria that came out in 2012, but I'm sure you're right about it not being accepted either. Luckily I do have letters for a short term disability that I had a while back when I was having a really bad flare where my rheumy at the time identified my disease as lupus which I will hold on to. What I don't understand is why there is such resistance to giving an appropriate diagnosis and why they wouldn't want to use some sort of diagnostic criteria. I'm sure there are reasons but I think the whole thing stinks. It puts patients who are sick on emotional roller coasters and causes a great deal of unnecessary anguish. Anyway, thanks for the helpful info.
Tala said:
First you need to understand that the criteria floating around is not accepted as an official diagnostic tool, and the ACR will not standardize one. They refuse. The list we've all seen was developed for selecting people for a specific study a long time ago, and that's all it was intended for. It's fairly broad because of that. No Dr will stand on it, even if they've used it, so don't ever think it will back you up. They always resort to their claim about labs not being evidentiary enough if given the opportunity - including if you had positives and then results changed due to meds reducing your inflammatory marker signs. They're sneaky that way. I've been in that boat.
I suggest you obtain and keep copies of all medical records, and especially from the one that did dx you with Lupus. Keep it in print in your possession.
I was pretty down, too. I just felt like I was going crazy or something. I am so glad we are here for each other. It helps so much with my sanity :-). Anyway, hang in there!
Tanya said:
I am in the exact same boat! My once positive labs recently came back neg. I told the dr that the labs were done when I felt great. She is going to do new ones. I am thankful that my new dr did not reduce treatment but believed my cry of pain and added meds for time being.
I really needed to hear I wasn't alone. I went into a depression thinking that maybe I was being a baby about the pain and hair loss. (I used to have such a high tolerance.)
I just have a question- those of you that don't have a solid proof diagnosis are you still on meds? I am just wondering...... my first Rheumotologist said Lupus m 2nd opinion said Fibro and CFS, and I went back and now she says Lupus & Sjrojens but maybe just Srojens and I have to get a lip biopsy. . . .
Other than a piece of mind on specific diagnosis what does having PROOF of diagnosis whether it be UCTD/MCTD or Lupus or say Sjrojens , change? I mean I know treatment for all are almost the same really. . I know it changes too..... but I don't know I am just wondering; I too am dealing with an 'unknown' im not bashing or anything I would Love to know what autoimmune I have.... does it change things with insurance? your plan of care more? .... just wondering sorry it may be a really stupid question.
I’m sorry you are dealing with this but I’ve been in the same boat. It took me more than two years to get my first diagnosis. I heard everything from MS to renal cancer to severe depression causing my symptoms. It wasn’t until I got extremely proactive that it was finally nailed down. I started keeping a daily journal. Everyday I wrote down things like my pain level, other symptoms, what I had to eat, my activity level, my fatigue level, how much sun exposure I had and anything else pertinent. I took pictures of rashes and hair loss. I also requested copies of all my medical records going back to childhood. My primary care doc started sending me to specialists, ruling one thing out at a time until I made it into a rheumatologist. I almost didn’t make it to that appointment because I felt so horrible that day but because I had traveled to Atlanta the day before just for this appointment and also had to wait months just to get that appointment I went anyway. I had a full blood work up done and my tests came back positive, which along with my journal and medical history led that doctor (after a few weeks of review) to give me my first diagnosis. I then did a few follow up visits with other doctors for second opinions. All of them agreed with my lupus diagnosis (I did go in to those appointments not telling them I had been given a diagnosis because I didn’t want them to just sign off on it, I wanted their real opinions).
Lupus is universally hard to diagnose. There is no surefire test that is 100% reliable, depending on where you are in your flare cycle and how severe or mild your symptoms are, you may appear to be symptom free so that is where the journal really comes in handy. Don’t give up, it may seem like a daunting thing but it’s not as impossible as it seems. I think the key is to be your own advocate, do everything in your power to get your voice heard. It’s also important to find good doctors. Keep your head up though, remember every appointment and every test is one more step closer to your diagnosis.
Apparently this happens more than I realize. My first diagnosis was Primary Sjogrens with + ANA, +ssA Ro and high RF. I don't have any Sjogrens symptoms (dry eyes, dry mouth etc) so she called me UCAD at my next visit. Then I had a flare needing steroids and she called it Lupus. Next labs due next month. Wondering what will be next. Fortunately Plaquenil helps a lot and is a rx for all 3.
One thing to nates tired mom, for a doctor to say it's "just fibro" is insulting his own intelligence. I went to sooooo many doctors back in '92 when I was having so much pain and weakness and the tests kept coming back negative. The doctors would say that there wasn't anything "physically wrong" meaning of course they thought it was all in my head. I would get so tired for the slightest things and up til that point I was very physically active, in fact I was a black belt in Taekwondo and very limber and healthy then things started going down hill in a hurry. I had so many symptoms popping up that couldn't be explained. I did some research on the net and came across a Fibromyalgia site that was like reading my life history. I went to my local doctor and asked him if it could be Fibro and he poo poo'ed the idea and recommended I didn't go looking for something to be wrong. I did talk him into sending me to a Rheumy who after a brief check said it was indeed Fibromyalgia. He did no blood work to see if it was anything else, but the physical exam for the tender points said it all. I've always had a positive ANA but they never seemed to even worry about it. I bought a book on Fibromyalgia and gave it to my family doctor so he would have an idea what it was and how to treat it. Back then it wasn't as well known and many doctors didn't believe it was an actual diagnosis. I had one doctor tell me that everyone gets it from time to time, like a pulled muscle or something. When my family doctor moved out of town I had to find another. I called around to the different ones and the first thing I asked was if they know how to treat patients with Fibromyalgia and you wouldn't believe how many still didn't think it was anything. Believe me, it is definitely SOMETHING! It got so bad I had to quit my business and go on disability. My recent visit with the Rheumy, a different one, did a bunch of blood tests and said it was definitely a "connective tissue disorder of some kind." However she still didn't want to put a definitive label on it just yet even though she believed it to be Lupus.
Why is it that doctors are so afraid of giving a definitive diagnosis when all of your symptoms, including the rash and loss of hair, painful joints etc and a positive ANA and MGUS blood tests tell them it's Lupus? I just don't understand their reasoning at all. She did however put me on the Lupus medication Procardia and Plaquernil not sure of that spelling. LOL I go back in October and she is to do more blood tests then.
I guess we're all really different in how we deal with this just like the disease itself which is different for everyone. Some folks seem to be able to just let it ride and not worry much about it. Others of us have a harder time with that. I cannot tell you why it's like that for me except that it makes it easier for me to deal with something I can nail down and when I can't I am frustrated. I'm sure it would be easier to just let this ride, but that's not where I'm at. I am glad for those that are able to. I really appreciate the support from those of you who do understand what I'm feeling. Can we allow each other to be where we are and support each other anyway? I hope so.
UCIrvine is a referral center for suspected Lupus. I don't know if your insurance will cover a second opinion, however my Rhuemy stated just this past week that 5 out of 11 is necessary for a diagnosis, however doctors are incredibly reluctant to make the diagnosis. (Please read the letter that the doctor wrote that JC posted...it makes so much sense to me) My Rhuemy went to school there, taught there and practiced at the Mayo clinic. I trust her implicitly. I am however, her first and only ANA neg patient through her entire career and her practice consists of an majority of Lupus patients in Las Vegas. She told me that because of my blood tests that without my kidney biopsy she would have had a difficult time diagnosing me with Lupus. She said that at times the "tissue is the issue". I could ask her for a referral if you are interested in going there. Please PM me if you would like.
Many of the drugs for Lupus are the same for Fibro unless you are having organ difficulty you may be better off with the Fibro meds. I would certainly rather be on just Cymbalta or Lyrica rather than CellCept (nausea, diarrhea, headache), Plaquenil (eye damage) and definitely Prednisone (nausea, bloating, loss of appetite, long-term organ damage).
Sometimes less is better.
I do hope you get a definitive diagnosis and truly hope that it is NOT lupus.
Don’t worry about the labels. Good luck to you!