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Thread: Undiagnosed!

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    Default Undiagnosed!

    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.
    Love...faith...joy...hope...strength...
    Lupus, you have no chance!

    Love and hugs,
    Cheryl
    (mom to my little Chihuahua, Brandi)


    Diagnosed with SLE, Sjogren's, Reynaud's, Celiac, and arthritis November 2006.

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    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.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    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.

    Rob
    Last edited by rob; 03-19-2010 at 08:17 PM.

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    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.
    Hugs,
    Marla

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    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.
    http://dermatology.cdlib.org/121/rev...cheinfeld.html

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    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.
    love
    Amanda.xxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    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.

    Rob

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    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.
    Love...faith...joy...hope...strength...
    Lupus, you have no chance!

    Love and hugs,
    Cheryl
    (mom to my little Chihuahua, Brandi)


    Diagnosed with SLE, Sjogren's, Reynaud's, Celiac, and arthritis November 2006.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    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.

    Rob
    Last edited by rob; 03-27-2010 at 01:55 AM.

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    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
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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