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Thread: I am so upset!

  1. #1
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    Unhappy I am so upset!

    I could just die right now. I am so frustrated and upset. I just got back from my new rheumy. She's a lovely person. However, she decided, by only feeling my joints, that I might not have Lupus.

    After being treated for 2 years and getting numerous blood tests, qualifying for the standard 4 out of 11 criteria, suffering with arthritis and extreme fatigue...wooops, maybe everyone's wrong.

    She decided this because I have good range of motion in my joints and I don't (I never have...) show the skin symptoms of Lupus.

    So Scenario 1: I don't have Lupus

    WHAT HAVE THESE DOCTOR'S BEEN DOING TO ME? Why did the Prednisone help my symptoms? Why have I always had elevated ANA plus double stranded DNA and extreme anemia? Why do I have Reynaud's Syndrom? Why am I sun-sensitive? Why do I have swollen warm joints at times? Why am I always sick? Is this all a big coincidence?

    This sounds insane, but the one thing I find comfort in is knowing I have Lupus. The years when I didn't know what was wrong with me, I felt like I was crazy. When I got diagnosed, I was horrified, but also a little relieved that at least doctors could now help me... and they did... so I thought.

    Scenario 2: I do have Lupus

    WHAT IS THIS LADY SMOKING? She has yet to see any labs. She is going purely off the fact that I can do arm circles and don't have a rash. Why do doctors always catch you on a good day? If she had seen me a month ago, I would have been much more "Lupus-y." My apologies.

    I cannot stop crying. Once again, no one can tell me what's wrong with me. I took comfort in knowing that's how Lupus works, but what if the last 2 years have been a lie? I'm distraught.

    Sorry for the novel, I just cannot believe this just happened. And if it turns out I don't have Lupus, guess I won't be posting here anymore. Not only am I lost without answers, but also shunned by the community I thought I was a part of. sigh.

    Maybe I'm jumping to conclusions. Sorry. So much running through my head.

    xoxo K

  2. #2
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    Hiya Kristen,

    First of all you will never be shunned by us! You can always talk here several of us have gone through the diagnostic roller coaster "..Yes... No ....Yes.... No.... maybe come back tomorrow and I might know?" So you are not alone and yes it's frustrating and sad to want to have something even if it is Lupus. We need to know what it is in order to start dealing with it and get out of our depression. Feel free to talk about your symptoms anytime..we all have them and we can all relate. As far as the new Rheumy and diagnoses sorry it didn 't go how you thought it should...but tell her that and ask her to explain the other diagnosis and tell her about your non-flare days. Hopefully she won't be to quick to jump to conclusions, but if she is "there are plenty of Doctor fish in the sea" Hope it goes well sorry your bummed but here is my hugs and kisses you way.
    Spanglishqueen AKA Brenda or "B"

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    Kirsten hunny,

    Please don't leave us because 1 doctor says maybe its not Lupus. We would have you either way, but to me it sounds like Lupus and if you've been diagnosed by another doctor don't just rely on the new one's opinion.
    I think sometimes people say stuff out loud that they mean to be just thinking (we don't need all of a doctor's thoughts, all that does is create stress). If you have 4 of the 11 criteria to diagnose Lupus go with that and find another Rhuemy!!! Why did you have this new one anyway?

    Try not to stress, it will only make your Lupus flare. I am sending you a shoulder to cry on, let it all out, you will feel better.

    Natasha
    Everyday holds the possibility of a Miracle

    SLE, Nephritis, Raynaud's, previous ITP
    Plaquenil, baby aspirin, Flinstones vitamins

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    Default hi

    Oh please take no notice of that doctor,get another opinion.I DONT have Lupus either and im still here.At christmas was diagnosed with it...then blood works came back...negative so now they say its Chronic fatigue syndrome n i have Fibromyalgia n other things. Please dont ever worry about being here...YOU BELONG and we all will support you and so understand the desperation n knowing the correct diagnosis.We have all been there and ARE there now right with you.You rest and tomorrow things will seem different.We are all figting for the 'right' diagnosis also.We know we hurt,we know we are not the same people we were before.I Know you belong....so keep posting.

    Love n hugs
    Amanda.xxxx
    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

  5. #5
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    Kristen...

    Head hugs...

    I don't even know where to begin...that is so insane, so inane...

    How come she didn't see your past results? She should have requested them from your previous doctor or you could have brought them?

    Did she understand you have been on drugs, prednisone to control your symptoms, flares and etc? Are you on Plaquenil too? If so, she should know these can cause our blood work to be negative...

    Did she do additional blood draws?

    If it isn't Lupus did she mention what it might me, could be....Sjogrens Syndrome...is she ruling out any other disease, syndromes?

    Hummm...simple..she is incompetent. Rashes and joint pain...wow wouldn't that be wonderful if that was all Lupus was, eh?

    My joints hurt awful and I can still move them, though I wince.

    Not all symptoms are active at once...and not everyone has the malar or any other rashes. Unfortunately I am always scratching one...here or there.

    And you don't have to flee...many here have been diagnose undiagnosed. I being one of them....and many haven't even had a diagnose. We are support not just for Lupus diagnose but to support and understand the ride of getting a diagnose. Pain is pain...you're in pain and so are we..right? So please stay...

    And once family, always family regardless...
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

  6. #6
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    Default Kristen

    I'm on my third rheumy, if it's any consolation. Had to find one who gave a hoot about the labwork and about the symptoms. They both count. Sometimes, they even contradict. Doesn't mean there is nothing going on. Just means it may be a little harder to figure out. Unbelievable that your doctor would come to the conclusion that you don't have lupus because you have range of motion and your skin shows no signs of lupus. Hello...bloodwork, diagnostic criteria, meds that alleviate symptoms.....

    Some lupus patients don't have sun/skin issues. Some lupus patients have good range of motion. Not that I want you to have lupus, don't get me wrong. I am just so done with doctors who don't listen or do their job.

    Seek another opinion. Regardless of your ultimate diagnosis, you are welcome here. People who suffer from chronic illness, whatever the label, understand your frustration. This forum is full of wonderful people, many of whom have no diagnosis at all. You are a person who needs support...you are not your diagnosis. If you don't have lupus, but you still need support, feel free to pm me anytime.

    Take care,


    Jana
    Life is measured not by the breaths we take, but by the moments that take our breath away.

  7. #7
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    God bless you all! You are too wonderful.

    To answer some questions,

    1)I left my last rheumy because every other one of his patients was 70 or older (he had no idea how to deal with a 19 year old's problems) and when I tried to discuss alternatives to prednisone because I was suffering severe depression, nausea and weight gain, he told me simply "I'm trying to save your life here." I had had enough.

    2) I gave this rheumy my most recent blood work from urgent care and the hospital and she is waiting on the rest from my old doctor (I'm also getting the original blood work that led to my diagnosis as well as the blood work that determined I was severely anemic and had double stranded DNA (2 of the 4 criteria... who would have thought!)

    3) What irks me is that she would make the assumption without this knowledge. If she had an inkling, she should have withheld it until she had actual backing.

    Like I said, I thought she was a very lovely doctor, very caring and much more understanding than my last doctor. I'm hoping when she gets the blood work she'll see it differently. Or perhaps she's on to something? I was just upset that she would assume.

    Lastly, isn't it possible (or even characteristic) of Lupus to have spans of remission? It's just sooo me to feel my best after waiting 3 months to see a doctor to figure out my problems. haha.

    Thank you all so much. This is such a constant struggle. It's so reassuring to hear that many of you have dealt with similar problems. The greatest thing I have learned from these past 2 years is that only YOU can advocate for YOU. I just have to keep fighting until I figure out what's wrong. I am NOT a hypochondriac (it took me almost 2 years to seek help for my lupus symptoms) and I deserve to know what's wrong.



    xoxo

    -K

  8. #8
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    I'm sorry to hear that your new rheumy was so abrupt to diagnose you. You think she'd have the sense to wait for your blood work and records from your previous doctor before stating that you don't have a disease you've been getting treated for. Its kinda scary that there are doctors like that out there. My rheumatologist just left town recently and now I'm waiting to get in with a new one (who I already dislike as she keeps cancelling my appointments).

    I wish you luck with your doctor, hopefully she either confirms that you don't have lupus, or realizes that you do so you can continue treatment. If not, I wish you luck on finding a new rheumy, this one doesn't sound like the brightest crayon in the box.

    Hugs and spoons,
    Jerzi
    Medications: CellCept, Plaquenil, Prednisone, Naproxen, Tramacet

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    Kirsten,

    First of all, I am SO impressed with how well you express yourself. I'm a communications professional, and believe it's rare to see anyone -- let alone a 19 year old -- write so well. I know this is totally off-topic, but it had to be said.

    Secondly, don't stress too much over the (lack of) diagnosis. Sometimes doctors know too much, sometimes they don't know enough, and you have to take that into account and decide for yourself what's best for you.

    If you 'click' with this rheumatologist (sorry, I refuse to use the word 'rheumy' )
    on your next visit, once she's seen more of your history, great. If not, move on. And do what's best for you in the meantime.

    Good luck, and keep up the great writing!

    Brian

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    Hi Kirsten,

    Please don't give up and don't think u are crazy. I started having problems when I was 14 it took me until i was 22 years old to find a doctor who understand my symptoms. (I'm now 27) I had been thru many doctors including ones in the military...they tried to tell me it was in my head and that I was a young healthy woman. I didn't give up my search and I finally found my Angel, my Rhuem doctor who dx me with Lupus and other stuff. I am soo sorry you are going thru this pain. It's frustrating and u feel like giving up but don't. Keep searching for a good dr. Don't settle for less. Take care

    xoxoxox

    neL

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