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Thread: Doctor says I have lupus...forgive me for laughing lol:)x

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    Default Doctor says I have lupus...forgive me for laughing lol:)x

    Today i went to my doctor about my recent chest pains ive been having.I knew i was getting over pleurisy but these pains had me doubled over n very hot.
    As you know i told my doctor recently i had a blood clot on the lung in 1998,but turns out he didnt know or remember.So i sat there.He looked at my swollen ankles actually listens and read my notes.He asked when i next see my rheumi i said i think Feb,its actually March.
    I said why is it my M.E, he said no actually i think you have Lupus. As you can imagine,the years of struggle,i sat there laughing.He said im to ask the rheumi to confrim this.I told him there is no way he will do that ive tried.He said he has also wrote to him so just tell him he said.
    So i wont hold my breath just yet,as ive been here before.But does feel good to finally get his acknowledgement,but my bloods come back like im the wonder girl lol,but ive not had one recently.
    Anyway,this was my day.I'll keep you informed.
    Lots of love.xxxxxxx
    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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    "I think you have Lupus" -Well, no s**t Doc! Ya think?

    Knowing the diagnostic journey you've been on Amanda, I have to laugh too.

    But hey, it's one more very big step towards a definitive diagnosis finally.

    Rob

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    Yes Rob lol,

    It did feel good and i told him i dont want it to be lupus,but he said its looking like it is.Inside i was shouting n poiting my finger at his head Told you so! But i didnt do it real life of course lol.Come March it'll all change again...just have to wait n see now.This pleurisy was a blessing in disguise really.

    Love
    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

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    Hi Amanda - you have literally, I mean moment for moment, word for word, just told my story! My pcp is sure I have lupus. I have the lung issues. I have the rheum who has me on methotrexate one moment to a bad fibro flare the next. Blood clots... Yep, we are walking identical paths which leads me to believe that once again, WHL has one hec of a lot more common sense and information that 90% of the doctors, at least when it comes to Lupus. What a funky disease this is!

    Yes, it is time to LOL! The lung part stinks but it just confirms what we knew all along.

    Blessings and I hope the pleurisy improves quickly.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by serand4 View Post
    Hi Amanda - you have literally, I mean moment for moment, word for word, just told my story! My pcp is sure I have lupus. I have the lung issues. I have the rheum who has me on methotrexate one moment to a bad fibro flare the next. Blood clots... Yep, we are walking identical paths which leads me to believe that once again, WHL has one hec of a lot more common sense and information that 90% of the doctors, at least when it comes to Lupus. What a funky disease this is!

    Yes, it is time to LOL! The lung part stinks but it just confirms what we knew all along.

    Blessings and I hope the pleurisy improves quickly.
    Why is it that so many highly educated and experienced healthcare professionals are so totally clueless about such a serious, and increasingly common disease like Lupus? I will never understand the ignorance. In my former profession, I spent a good portion of my day learning about the latest advancements and innovations, wondering how they could be applied to advance the "state of the art".

    I was considered an expert in my field, yet each day I shunned that title in favor of adding to what knowledge I already had, knowing that there is no end to learning. My business involved products and issues that were life and death, and I took my business very seriously, but I was just a mechanical engineer, and certainly not a person with the responsibility of a doctor or related specialist.

    It just makes no sense to me that so-called professionals in a field that has such a direct impact on people's health, and lives, seem to be so damn stagnant and apathetic. This seemingly never-ending cycle of ignorance really pisses me off to no end.

    OK, I'll get off of my soapbox once again.

    Rob

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    Wait Rob..don't get down, I was just about to climb up there with you!! I couldn't have said it better and, as you all know, ignorant and uncaring doctors are one of my biggest pet peeves!!

    Amanda; I misunderstood you and thought that you currently had a blood clot. I am glad to know that I was wrong!

    So..... I am an avid fan of "Spartacus, Blood and Sand" and my favorite line from that show was in last season's finale..."Kill them, kill them all!"
    I realize that this is a rather harsh sentiment for these stupid doctors, but it just makes me feel good to say it!!

    I am sending you gently hugs.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    OMG OMG i certainly have my fingers crossed that is that final big first step to a proper diagnoses!!!

    i am sneding as many postive thoguht my body can spare right now that may be just maybe your docs have finally pulled thier finger out the butt!!!!!

    looking forward to hearing that finally you get a proper diagnoses what ever that maybe

    much love xxxxxxxxxx

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    well so nice that your doctor has finally arrived on this PLANET! small victory but a victory indeed right?

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    Serand, its so good to know im not alone,i always say that in my posts on the forum to all the newcomers,because i know just how many of us are out there.Thing is,as we wait we get sicker.Today,i sound like the dirty caller lol,like an old man,wheezy loud.But thats good its the Mucodyne working thats all.But i am saddened to know you are going through it n wish i was the only one,because i know how soul destrying this journey is.But today i woke feeling 'believed'.So goodluck on your journey too. Part of me isnt with hope,as ive been here before.If the rheumi is busy im not going to be heard...end of.

    Rob, i could see the top of your head from here,woohoo you are so right staying on that soapbox with Carlotta,because what you say is true. I think for me, in the UK its easier to give a patient the M.E diagnosis,as its a 'quick' appointment then,more figures to add on the report at the end of the year,i can come back again,i look well, M.E is like the get out clause it feels like,for you have a lot of symptoms but im not too sure what it is.I am not the easy to diagnose patient.So its cheaper in the long run.In the UK,im sorry to say those who have M.E are treated like 'time wasters' 'Lazy' and are not treated like they are ''all there''.I know because i have the label.Once before the rheumi said i had lupus,then took it back after the bloods came back.Now my doctor says it is,but like he said he canrt diagnose me as the rheumi is the expert.
    What worries me is when he says nope its not....how many more years do i stay getting this treatment? Its not nice!!
    I told my doctor yesterday,after all these years ive read up on the illness M.E and also Lupus.My symptoms fit more in the Lupus category rather than the M.E.I told him yes im no expert,but its common sense to list my symptoms i have and had and look at the M.E symptoms,but most of all look at my BACKGROUND!! This is so important.Dnt assume like i did they read your notes,remind them every appt of what you have been through,like me,pulmary embolism,glandular fever,pheumonia as a child.I have many more of the lupus symptoms plus the Fibro,Srogrens,Raynaurds etc.Time will tell.But thanks both,you are so right!!

    Heidi,so glad to see you back here.I just recieved your positive thoughts woohoo,im locking them away for the rheumi appt in march.lol.Hope you are baring up ok and today is being good to you.

    Tortugal, yes now lets hope the rheumi arrives soon too lol.Thinking of you n your Mom,hope she is fighting on and you too.

    Lots of thanks just keep that little bit of hope n most of all keeping fighting the doctors.They are human not the humans with the god complex.They can make mistakes.Time will tell.So glad i got the courage from everyone here to carry on and not be intimidated by them,some can be scarey!! Thank you!

    love n gentle hugs
    Amanda.xxxx
    Last edited by Angel Oliver; 01-28-2011 at 05:37 AM.
    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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    don't you hate it when you press the wrong button!! just typed message and accidently dleted arrggh blood brain with it work with the rest of me!! lol

    so here i go again!

    amanda

    glad you got the postive thoughts !!

    i just had this thought why not trying to get your gp to reffer you to st thomas or one like it closer to you! i wasn't happy with my treatment from my local remu and so got my gp to refer me to st thom's and my health has done nothing but improve since! admittly i still get my bad days like today when there has been a spoon monster about!! but drug intake is alot less and i'm not half as bad i was this time last year!

    well lots of love to you! and fingers cross i don't delete again! xxx

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