View Full Version : Undiagnosed!

03-19-2010, 06:39 AM
Hi everyone,

I've not posted in a while, honestly because I've been in a bit of a shock. I went to my rheumy a few weeks ago, and when she looked at the labs, she said I do NOT have lupus! What?!?! She said everything is from Sjogren's, which I already knew was "advanced" and very active in my system. I didn't understand how I could have the butterfly raash and photosensitivity, yet not have lupus. She said it's possible, that two symptoms are not enough for a diagnosis. What confuses me is that when I was first diagnosed in 2006, there was no doubt I have lupus. The labs ALL showed it. So is this remission?? Can I be in remission from lupus while the Sjogren's is horribly active? In the end, I guess it doesn't matter all that much...the treatment for lupus and Sjogren's is probably much the same, and she said to stay on Plaquenil. Just weird and confusing for me.

And now I'll try to catch up with everyone, it feels like I've been away for ages!

Oh, and I decided not to go on the methotrexate. She agreed that I'm "okay", not great, but we can hold off for now and see what happens because spring and summer are usually my healthier times of the year. Maybe in the fall we'll consider it again.

03-19-2010, 08:02 AM
I've been told "You have the signs of lupus but the bloodwork was negative", "You show signs of developing Lupus", "You only have Sarcoidosis which doesn't mimic Lupus", "Well, it may be Lupus but let's wait and see".

I think it's the flip flop commitment to our diagnosis that makes us lupie!!!! These doctors are the ones that are crazy.

I am getting ready to go back to the rheumy in a few weeks too and this time, I am taking visual aides with me. (That trick always seems to get their attention and respect and make them LISTEN). I made a chart of the symptoms of Lupus and Sarcoidosis. Like you, I have the butterfly rash & other symptoms not associated with Sarc. I am hoping this chart will open his mind. Right now his attitude is "Why would you go looking for another diagnosis?" He doesn't understand, with or without a label, the symptoms are still there and they don't fully match my current label. More than a label, I want a plan to help me stay as healthy as possible with ALL of my medical symptoms and conditions. If you want, I will email you that chart and you can adjust it for Sjogren's and Lupus.

03-19-2010, 10:53 AM
Hi Brandichi,

So, you have now experienced the infamous "un-diagnosis". Here's the deal, unless it can be determined that your original SLE diagnosis was incorrect, you still have Lupus. I can't fathom how these so called medical professionals can be so ignorant of basic facts regarding the disease. Until there is a cure, we still have Lupus even if we go into remission. It can become "dormant" so to speak, but it's always there.

These idiot Dr.'s don't seem to realize what they put us through by flippantly throwing a different diagnosis around like this. You have Lupus, a chronic, incurable, and sometimes fatal autoimmune disease. You go through the shock, fear, and life altering changes that come with the disease. And then you get "Oh, you really don't have Lupus, we were just kidding, no hard feelings". WTF?

I was "un-diagnosed" once, and guess what, I still have Lupus. Some a-hole rheumo, who didn't even read my records, and who was only with me for ten minutes face to face, tried to tell me that the other FOUR rheumo's who without question diagnosed me with SLE, were wrong. Don't get me wrong, I would do anything to not have this crappy disease, but I know my symptoms, I know myself, and I know what all my various test results over the years show.

You know your own body. Trust your knowledge of yourself, and your instincts. And if I were you, I'd fire that new rheumo.


03-19-2010, 08:09 PM
Hi Brandichi,
It's good to see you here again. I saw your post on another site, and I was afraid that you were going to leave us here at WHL. As I told you on that site, you could well have MCTD, as I have, and have an overlap of symptoms that include Lupus, Sjogren's. etc. Hang in there, and stick to what you believe. You know your own body, and you should be able to figure out what it is telling you.

03-26-2010, 01:35 AM
Hi Cheryl. It's good to see you back and I look forward to reading more of your posts.

I want to pass along something my rheumy told me... Alot of lupus patients also suffer from sjogren's.

In my own opinion, for what it's worth...if it sounds like a duck, and looks like a duck... if they found lupus, called it lupus, you have lupus. It's just not showing up in your lab work (which it is very good at doing) and I hope your doc isn't relying solely on that one tool. Symptoms play a big role in diagnosis along with other things that could be found in lab work.

Sjogren's can cause a lot of trouble all by it's self and can make you feel really awful. But it is distinct. Check out a clip from an article...

Sjögren syndrome (SS) and systemic lupus erythematosus (SLE) are both collagen vascular diseases that can be accompanied by Ro antibodies. Clinical evidence suggests that they are wholly distinct diseases. SS is strongly linked to lymphoma while lupus is not. SS patients do not commonly exhibit photosensitivity even though anti-Ro antibodies circulate in their blood; SLE patients generally exhibit photosensitivity. SS does not respond to hydroxychloroquine in a reproducible fashion whereas SLE does. SS has not been linked to parvovirus B19, but SLE has. However, SS and SLE do have similarities. Their autoantibody profiles are similar. They effect women more than men and have similar HLA haplotypes and autoantibodies; this is not likely coincidence but it may not clinically relevant.

Angel Oliver
03-26-2010, 08:10 AM
Oh Cheryl,

I feel for you....im going through similar.Just know we are here for you.Hope Brandi is doing good and im sending you gentle hugs.

03-26-2010, 08:38 AM
Hi Cheryl,

Just wondering how you are doing. I wouldn't make too much of this whole "undiagnosed" thing, as it's fairly common. It just means somebody slept through Autoimmune Disorders 101 back in med school. Just find a good Dr./rheumo who is attentive to your needs as a patient, and stick with them.


03-26-2010, 08:40 PM
I don't know why this has freaked me out so much but it has. I've been struggling, trying to figure it all out, and getting nowhere. I guess it's partly that ever since the end of 2006 I learned how to live with lupus, not always all that well, but at least I knew what I was dealing with and what to do in most cases. Now to be suddenly told I don't have it after all makes no sense to me and I didn't even know where I belonged anymore. I withdrew completely and even e-mailed my minister to say I was taking a break from my volunteer work at church, which is a HUGE part of my life. I was planning to leave completely and go to another church, but I've changed my mind on that at least. I'm going to force myself to go over there tomorrow and do some work for an hour at least, and then go swimming which always makes me feel better.

Logically, I know the lupus didn't go anywhere, and abbasgirl, this information helped tremendously - thanks a million for that. All of your posts helped...I know you understand and you've been through it, even if it's something totally new to me and I don't understand it a bit. Rob, I can relate so much to what you said. I too would give anything to be rid of this, but I know my body and I know what I have. Of course I do have Sjogren's, and that was my first diagnosis, but I also know I've had too many lupus symptoms not to have it in the end. And regardless of what is living in my body, I am so tired of being sick. If the doctors can't figure out what's going on, why can't my body just be normal?!?! I hate being different, needing accomodations, and feeling less than everyone else because I have a stupid auto-immune disease!!! And although one of my friends means well, she is always inviting me to visit her and doesn't seem to understand I CAN'T TRAVEL with my health issues!!!!! I get upset all over again when I read a message from her telling me how beautiful it is in the south now, and how the guest room is just waiting for me. Can't she understand I would LOVE to go see her, but I just can't do it?!?! Why can't people listen and understand?????

I'm not that angry at my rheumy because if I look at this rationally, i've only been seeing her for a year, and she's only had blood drawn on me twice. Both times, the labs have looked pretty decent, except for the sky-high liver enzymes and the Sjogren's. She wasn't my doctor when the lupus was in a major flare, and most of my flares have been between appointments. So she's going by what she's observed. There's no denying that the Sjogren's is very active and always has been. I can't even go anywhere without a water bottle just like a kid with a security blanket. And I haven't picked up my records from my old rheumy, so she has none of that info to guide her either. I need to do that next week when I'm on break. I asked at the lupus alliance for the name of another doctor and there aren't a whole lot that are any better in my area. Well, there is one but I'm not allowed to see him because he's in the same office as my first rheumy. And they don't allow you to change doctors, even if you're no longer a patient. Which is frustrating because he's the best.

I guess the other thing that's throwing me for a loop in the midst of all this is that, well, my biggest fear is getting lymphoma. I know it's curable and all , but it's still a major fear for me. So this week, one of my colleagues was diagnosed with...lymphoma. And I'm one of only two people who know, and I've been supporting her all week, trying to be strong and positive for her all the while my mind is screaming to just run away from even saying the word!!!! But it's getting better. At least by walking through this with her, I'll be more prepared if/when it happens to me, right?

Anyway, thanks for listening. I kind of wondered if I should even be here if I don't have lupus, but I finally realized that other people here are waiting for a diagnosis, misdiagnosed, undiagnosed, and diagnosed, so I'm here too. (Marla, I lost my password for that other site, and haven't had the energy to go through the hassle of asking for it or searching through my stuff to find it. I'll get there, probably when I'm on break). And hopefully this depression will lift and I'll be totally back to myself in another day or two. I'm counting on the weekend to help a lot.

03-27-2010, 01:53 AM
Hi Cheryl,

Just a couple of things I'd like to tell you. No matter what your diagnostic status is now, or may be in the future, you DO belong here. You are valued member as well as a friend to many people here, so please don't worry.

In regards to being "different", and needing some different accomidations than others, I would say that yes, we are indeed different. This isn't always a bad thing though. People with Lupus can have special needs, but people with Lupus also have some special things to offer. I think Lupus gives a person empathy for others that they may not have had when they were healthy. And it takes mental strength and a whole lot of determination to get through the bad days. Empathy, strength, and determination, are good things.

I know what you mean about wanting to just withdraw from life. There was a time when I didn't feel like I belonged anywhere, and for years after my diagnosis I withdrew into self isolation and have only recently started to open back up to the world around me. I think going to your church for a bit, and going swimming, is a good plan. You might not want to do it, but I think you'll be glad you did afterwards.

Just hang in there, you will get throough this depression and you will be OK.


Angel Oliver
03-27-2010, 05:54 AM
Rob said it all Cheryl.Its so confusing,frustrating and its like two steps forward a huge step back.Just rest and know you are certainly not alone in this. When you are ready try go back to your church,isolation can feed depression, mines having a feast lol. Hope you have a nice weekend,do something nice,even a nice bubble bath or watch a nice film.Always know we are all here.
Thinking of you
love Amanda.xxxxxxxx

03-28-2010, 10:53 AM
Hi Cheryl,
I hope that this weekend is a good one for you and that you are feeling better about life. Rob is right. No matter what, you've got friends here who understand. He's also right that not withdrawing, but just getting out there and getting involved with others is a good way to feel better. Perhaps you could make visiting your friend a long-term goal and then work up to it? If you keep doing a little bit more each week, you might work up to having enough energy to get on a plane and go. I would just make it very clear to the friend that I want to take it easy an do lots of "catching up" while sipping cool drinks at her house. Hopefully, once the weather gets warmer, you will feel much better.
Can't your new rheumy request the records from your old rheumy? My new rheumy seemed to be questioning things a lot the first time that I saw her. However, once she received the records from the rheumy in Texas, she's been very different, and very helpful. Your doc is the one to talk to about the lymphoma fears, too. I've been told that there is a very small chance of it, so I'm just counting on that.
Sjogren's seems to be the thing that shows up the most strongly in my bloodwork, too. That's why I'm going to the conference in a couple of weeks. I'm sure that you've read that there is primary SJS and secondary SJS. From what I understand, if there is any positive evidence of any other autoimmune disease, then the SJS is secondary. That must be what ours is, since we've both had positive teats for other AI issues. I've been researching SJS quite a bit, and I've found that it has LOTS of overlapping symptoms with my other AI issues. It even is often misdiagnosed as MS, which is what the neurologist was trying to think I had.
I've come to the conclusion that ALL of these AI issues are on one continuous spectrum. We are all individuals, so each one of our bodies seems to pick and choose from the spectrum of possible AI symptoms. I think that's why our diseases are so very difficult to pin down. I sort of like what my rheumy back in Texas said. She called it MCTD and said that it didn't matter that one disease didn't show up as predominant - all of them taken cumulatively were making me feel pretty miserable. Perhaps if both you and your rheumy can look at it that way, you can find the right treatment for you and get to feeling betteer.
I hope this helps, sweetie.
Gentle Hugs,

03-29-2010, 06:56 AM
Hello Cheryl,

So glad you didn't leave us. I'm also one of the undiagnosed, so to speak. I was so close to a diagnosis a couple of years ago, and then our insurance changed, and so much of the testing and doctor fees were no longer covered, and we just weren't in a position to pay for it, so I decided to wait a while until we could handle it on our own. Well, in the meantime we also changed primary care physicians, and recently visited him for a problem with fibromialgia in my foot. He looked on this file sharing site that the doctors have around here, albiet not all files are on there nor do all doctors share everything, and low and behold, he decided I absolutely do not have lupus. Hmmm, call me crazy, but, given the fact that I did not have the regular testing or doctor visits it takes to even make a diagnosis, and that he was going only by the one, count them, one, ANA I had done, I doubt he has any idea how a diagnosis is even made in Lupus, much less has the experience with Lupus patients to understand what telling me that would do to me emotionally.

This roller coaster ride we are always on doesn't get any better even with a diagnosis, since we go in and out of symptoms, and the medical community is so rampant with misinformed doctors.

The good news is that you are getting treatment for what you are suffering with. As long as someone is doing something to help you manage your symptoms, and as long as you know the truth because you are the educated one in the team, then maybe with patience the doctors you deal with will come to understand that yes you do have Lupus, and no they don't know everything when they exit medical school. The human body is so complex, and so amazing. Diagnosis is just educated guesswork. Anyone that claims a diagnosis is more than that is kidding themselves. You cannot rely soley on test results. How many times do we hear of women being told they have a tumor in their abdomen just to give birth to a baby, not a tumor at all? How many times do we hear of someone being told they're going to die, given a timeframe, and then not only outlive that timeframe, but, recover?

The science of medicine is only science as far as tests and treatments can take them. The rest is just guessing, finding out whether they're wrong or right, and then guessing again if things either change or what they tried doesn't work. Your doctor is guessing wrong, and eventually she'll figure that out. In the meaintime, stick to your guns. it's your body and no one knows it better than you do. You've done your research in ways I guarantee your doctor hasn't, and so you are making a much more educated guess. Trust yourself.

03-29-2010, 07:16 AM
Hello Cheryl,

So glad you didn't leave us. I'm also one of the undiagnosed, so to speak...

snipped for brevity

...stick to your guns. it's your body and no one knows it better than you do. You've done your research in ways I guarantee your doctor hasn't, and so you are making a much more educated guess. Trust yourself.


We don't have any awards here for the best written post, but if we did, you would be given one. Well written, and well said!



03-29-2010, 09:04 AM
Aw thanks Rob.

04-20-2010, 12:33 PM
Hello again everyone,

(Beware...I think I've written a book here!)

First, I want to thank all of you from the bottom of my heart for every word you posted. I thought about everything you wrote many times, but I spent the last few weeks really working on myself...and learning more than I ever expected.

I am okay, both physically and emotionallly. Finally! Well, besides this pesky sinus infection, but that's temporary!) What I realized I had to do was fight the urge to isolate, which is what I was doing. Not only was I falling into the trap of isolating in regular life, I was starting to do it online as well, and I knew that was not going to help me. I also used the period of Lent and Holy Week to try to bring about a real change within myself. And amazingly, I have.

I understood that I had a choice...to fall headfirst into the depression I was heading for, or fight with everything I had to move past this and come out healthy on the other side. That's what I did. I stayed off the computer almost all the time except for e-mail. A little bit of facebook, but not much there either. I was on spring break from April 1-11 and for the first time in a very long time, I had a real life again! I got together with friends, old friends, who knew me B.L. (before lupus). It felt wonderful that even though they knew about my health issues, that didn't define who I was with them. It's not always like that with most of my other friends. I love them all, and I know they love me, but they worry about me and sometimes that makes me feel uncomfortable. I want to be ME, Cheryl, not "the one with lupus". So with these old friends, that's how it was. Not that we don't have our issues, we all do. One of them met us for lunch directly after having chemo. She's been at stage 4 for the last 15 years, and still looks fabulous!

I went to the labyrinth, and had the most powerful emotional and spiritual experience of my life. I won't share that here, not now anyway, but I learned a lot about myself on that day and finally found a sense of peace. I spnt a lot of time at church, and I had been at an isolation point that I was seriously considering leaving that too. And that's a huge part of my life, where many of my closest friends are as well as my minister, who I love very much and I know she loves me. I ended up more committed to being there than ever, and through that change within me, I was invited to attend a prayer chaplain training program in Ohio for three days in May with my minister and some very good friends. I knew others were going, and I wished I could join them, but I never thought I'd be included. It was incredible how amazing I felt when she asked me if I would like to go!

Not only am I looking forward to that, but this is also about lupus. I had decided that travel was something I could no longer do. Not after my disastrous trip to the UK in June 2008, when I arrived in one of the worst flares ever and was sick all summer. But this time, I won't need to fly, we're driving and it's just 2 hours away. It's only three days, and I'll be surrounded by people who know about my health issues and I trust them. AND...if I can manage this successfully, maybe I'll have confidence in traveling a little again. Not to Europe, but maybe in the US again. Just being open to that possibility, that lupus hasn't stopped my life means everything. That has changed my entire outlook on living with lupus/Sjogren's. I believe in myself again, and that feels great.

I also learned to listen to myself and stand up for myself. Teresaa40, you are SO right!! It IS my body, and I know it better than anyone else. I'm not blindly listening to my doctors or believing everything if it doesn't feel right to me. I never did take that neurotin, because I knew how fragile I was emotionally. Knowing it could cause suicidal thoughts/actions, there was no way I would take it at that point. I'm still in a lot of pain much of the time, and that is frustrating, but I also know "this too shall pass."

It's been long enough now that I've been out enjoying life, and getting back to who I am that I know I'm not going to isolate again. Well, no promises on forever, but definitely not in the near future. I'm going to the lupus support group tomorrow night, and I want to do something special for May, lupus awareness month. Don't know yet what that will be though.

Oh, and guess what? In my push to get out in the world again and let myself go after my dreams, I have an amazing opportunity!!!!!! I went to a meeting over break at the local newspaper office. They're looking for people to write blogs and link to the newspaper site. I wasn't sure at first, then one of the reporters e-mailed me to ask if I had decided what to blog about. (I had thought about lupus, but there are so many out there, I wasn't too excited about it. Especially because one day I'm going to write a book about my experiences and I wanted to wait for that). She suggested writing about my city. And I LOVED the idea!!! Not only that, but.........................I received an e-mail from the Executive Editor of the paper saying that both he and the online editor were excited about my blog and wanted to take me out to lunch to discuss it!!!! WOW!!!!!! I can't take off work for this, so we're meeting on Thursday after work at their office. But how exciting!!!! It's always been my dream to write, I was torn between teaching and journalism in high school. Maybe now, at 42, I can do both? Not to mention that I'm all too aware that the time will come when I will no longer be able to teach. Writing is something I could do from home, anytime, which would really solve a major lupus worry of mine.

Oh, one last thing. I picked up my records from my first rheumy. I thought it would be hard to read it, but it actually felt good to see how far I've come since then. And, it's more than clear that I DO have lupus. Fortunately, it's just not too active right now. I believe that the Sjogren's will settle down too eventually. But in the meantime, I'm not going to wait for that to happen, and stop my life until that time. I'm living - with lupus and Sjogren's - and enjoying every possible minute I can.

Again, thanks a million to all of you for every word here...for your friendship, your support, and for being such amazing people!!!!