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Thread: WOW, where to begin

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    Default WOW, where to begin

    Hello
    I been battling health troubles for the post 7 years. I had doctors, family all didn't believe me. I was alone and scared, my health got worst last couple years to the point I went out looking for answers. I did view Lupus and other diseases and I know I didn't have Lupus. I didn't have the rash or other sign. I was the one that come up with MS. I went to a nuro in 2011 did a second MRI and a C-spain. Come back Neg however there was Demyelinating disease. How is this not a red flag, I got all of my medical records and from 03 to now Red and white blood count Abnormal. I view my 2010 record and my Ex doctor label me with bipolar, BPD just to know a few. I know that when ant doctor seen that, they will think I am crazy. I was very angry, and yes I did call that sorry (Beep) up and asked why did you lie. No responded, anywhys I contacted a Rhumy just to rule out lyme, lupus ETC. I showed up April 21, and he told me I don't have fibro or lupus. He took 7 tubes of blood (Big, med, and small ones) and on May 2st he called me up ( Which that should have been the first sign, I never spoke to a doctor just nurse) and told me he was shocked and run the test twice. Both times come up as Pos Lupus, He set me up to see a nuro on the 31st of this month. But I was in shocked and I cried. I felt so alone, what is this? Am I going to die? All of these thoughts run and I am doing better now but still learning the ropes.

    But this Lupie hide for too long and drive me crazy and Lupie must have laughed within myself. Knowing I got those looks and talk. My family still don't believe that is sad. But I am on meds, won't work for two months but I be ok. I am glad to found a group to come to and vent or cry.
    Thank you all
    Liz
    Last edited by lizbond36; 05-08-2011 at 05:04 PM. Reason: Brain Fog, Not the 1st of May Sorry

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    Hi Liz. Welcome to WHL! I know this is a scary time but try to relax a bit. Lupus is no longer a death sentence as long as we take our meds and take care of ourselves. Sadly though, your story is very common. So many of us go through what you went through. Years of being looked at like we were crazy. Doctor after doctor not paying attention to us. The hard part about Lupus is that there is not really a "normal" lupus. Some of us don't have the malar rash or any other rashes. Some of us have seizures and others have swollen joints. Lupus is a disease that attacks our body at its weak points and since each body is different it can show itself differently. It makes it really hard to diagnose especially if we are seeing a doctor that doesn't understand the disease or listen to us.

    There are people living with Lupus, MS and all the other autoimmune diseases that have been dealing with it for many decades. You life isn't over because of one of these disease. It changes a bit but it isn't over. We will be here for you while you go down this path. You are now part of our WHL family and you are no longer alone
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Mari
    Thank you very much, I am on Pankillers, muscle and the lupus meds P something LOL. My memory is worst then ever. I was wondering can I list whats been going on? My (Forgot how to spell it) This is too much for me to handle, Simple words I can't spell, It seems like I have a 5th grade spell. Has anyone have this?
    Anywhys sorry Mari, thank you again for the warm welcome ;-)
    Liz

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    Quote Originally Posted by lizbond36 View Post
    Mari
    Thank you very much, I am on Pankillers, muscle and the lupus meds P something LOL. My memory is worst then ever. I was wondering can I list whats been going on? My (Forgot how to spell it) This is too much for me to handle, Simple words I can't spell, It seems like I have a 5th grade spell. Has anyone have this?
    Anywhys sorry Mari, thank you again for the warm welcome ;-)
    Liz
    Hi Liz. I would guess that your "lupus medicine' is Plaquenil. Most of us are on that. It is the first drug they give most of us. As far as your memory goes, yes, that is very normal and we call it "brain fog". There is a thread here that will make you laugh but will also make you feel less alone. It is call "you know you have brainfog when". I will bump it up so it will be near the top of this list.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hi Liz,

    Welcome again to WHL and thank you for explaining your story.
    I know it's hard but try and pace things more and try not to worry so much because Lupus itself does thrive on depression and then symptoms are felt more.
    You may need more tests to come because if there's a possiblity of Lupus it plays with the bloods and fluctuates them, where sometimes it can give off false readings.

    For years myself i've had seizure's, manic depression, bipolar like yourself, strokes etc and it was'nt till 3yrs back they diagnosed me with A1 Diseases with over lapping Autoimmune Diseases and then to be told i was born with it, i was so flustrated and upset like yourself because for years all they could have done with taken abit more bloods to look furthur.

    Please try and be carm, although i know it's not that easy but it will ease any stress and come on here and vent away.

    ~Hugs to you~ Terri xxx

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    I'm so sorry. I know how it feels when your family or medical professionals treat you that way. I can overlook the medical team more so, they have patients back and forth who just pretend to be sick for drugs or disability because they are too lazy to work and just want to sit around and use drugs every day. I've seen it, and I know it happens. I think it affects everyone worldwide, that people like this exist. Just to prove my point, how hard is it for you to get a narcotic if you need one? I can, and I don't want them, but I know it's difficult for many people going through severe pain issues. Doctors should do continuous drug testing on patients and settle that issue down some. Your family should be more understanding and considerate toward you than anyone. Most people do not understand chronic pain, and in such a case, there is really no reason to waist your valuable time trying. Even the one's that are understanding toward you, really don't understand it, unless they are going through it themselves. I guess it's hard to get the full grasp of what it would be like, say if someone was blind, until you actually experience it yourself. I think we all could put a blindfold on for a week, and really learn how to apprieciate how wonderful it is to have our vision. People take their health for granted. They just don't know how great it is to have good health and how horrible it would be to lose it. A good example would be where I have smoked for 23 years, way to go with apprieciating my health before it all went downhill huh.

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    Thank you everyone, thanks for the thread. I did laugh and I keep going back to it. Thanks Mary for your reply I take your words to heart Terri I had also thoughts of this as well, I will call my doctor on Monday as well. I write that down on my sticky note

    Liz

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    Hi Liz,

    How you feeling today?? and please let we know how things go when you ring your doctor. xxx

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    Default ok i need to vent!

    where to begin. beginning i guess.

    So i have been diagnosed when Lupus in March of this year.. but having trouble finding treatments because i cant find a stable Rheumatologist. the first one would only spend like five mins with each patient. When he finally diagnosed me he couldnt even answer my questions of what lupus was and told me to look online then gave me some pills and went on his way to the next patient. I finally had my other doctors apt june 27th with another doctor who sent me for blood work which i went to the next day then i called back a few days later friday to find out my results. after first the secratary put me on the phone with the nurse who said some things look ok but other things look UNUSUAL... so she would have to wait to get comments from the doctor and call me back.. all day i was nervious because though these past few days i felt my flare ups growing and unusual was a concern for me because he was checking my kidneys. so an hour before they closed i called back only to get the answer of "oh the doctor didnt get to any of his call backs so he'll get back to you." go figure he never called back. now there was a 3 day weekend a head of us of me worried. SO TUES comes around and i called back to only get the same responses! NOW THURSDAY comes around and i go to my primary doctor to get my blood work and to do research myself... from what i can understand.. i think things are of some concern. why are some doctors so rude? he should not even have his medical licence and treat patients in such a way.

    I finally have a new doctor who seems nice because she heard my story and pushed my apt with her to tues and feel really ill.

    Oh and on top of that i had to take one day off of work on sat. because i am really sick cant get out of bed and my job yells at me.

    has anyone been in my situation of an any help to ease the aches and pains

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    ok i didnt mean to post this here... still new to the site

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