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Thread: Hello,new here and so scared after 7 yr's of doctors finaly a diagnosis cns lupus & s

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    Unhappy Hello,new here and so scared after 7 yr's of doctors finaly a diagnosis cns lupus & s

    I had been on m.s. forum just got through being run through ringer by second
    neuro, as my lates symptoms left my legs numby from knees down side of face
    loss of balance,cognitive,short term memory loss ,dizziness etc.

    had lumbar puncture,eeg,emg/ncv,mri's head,back,neck by last neuro. have damaged nerves in legs,hand's,carpal tunnel. and 12 lesions on the brain in the subcortial mostly white matter, frontal lobes stateing most likley demyelateing disease. this is the latest findings due to an er visit when my face & legs went numb& balance issues aprox 7months ago.

    was totaly freaked out to find i had 12 brain lesions. when i was sent to first neuro 3 yr's ago for same issues along with lupus and autoamuine symptoms
    he just blew me off and ran some test at that time mri with die revealed 1 lesion in the white matter.

    for 7yr's that i know of been haveing these on and off symptoms
    constant low grade fevers 99.9 -100.4
    naushua
    severe stomach pain
    severe knee & back pain
    mouth & nose ulcers
    butterfly rash
    skin rashes & hives
    hair falling out badly
    photo sensitivity
    cognitive issues, problems multitasking
    headaches, dizziness, virtigo spells
    severs fatigue,blured vision
    frequent urination, direrear
    constant broncitus & u.t.i's that had never had problem with
    fingers turn white & red numb
    any way 2nd reumatologist kept doing blood work only thing come back positive was high ana and elevated ana at times elevated wbc and she would
    tell me i had all the symptoms of lupus & sjogrens & ryanuads but my blood work kept comming back normal for lupus & sjogrens. while all the time i kept
    getting sicker and had loss so much weight.

    she was a very young doctor so finaly she put me on a 5mg predizone witch
    helped a bit and sent me to another rumey at a teaching hospital to help her get a diagnosis. well he took 15 tubes of blood,lung x-ray & hands x-ray ask
    lots of questions checked me out thourly went through all my recent test & medical records and seemed very upset previous rumey had not ran sertin test
    and the shape she had let me get in for her to be doctoring me for past 2yr's.

    he went to explaneing about meds for lupus and sjogrens and how some were toxic and some would cause infections and cancers. long story short i ask him colud he please tell me what disease he was leaning toward after 7 yrs of being sick & not knowing i needed to know some kind of name before i had a nervous breakdown! so he tells me looks like lupus & sjogrens so i ask is that what has gone to my brain and he said yes, but let's see what the blood work says and the lumbar puncture shows so i was relived to finaly have a name
    to this monster of a disease, but also scared to death cause what i read on it
    cns lupus or sjorgrens has a very poor outcome.

    i go back dec 21st to get final results and diagnosis and he says he is gonna have me a treatment plan and will do his best to help me and try to put me on a medicine that will have the least toxic affect.

    sorry so long, but was trying to give ya some background on introduceing myself. it has been a long road and am haveing a hard time dealing with
    the lupus and sjogrens gone to my brain expecialy when you keep telling your specialist something is bad wrong and your getting worse.

    would appreciate any input any one has expecialy if you have been diagnosed with cns lupus. Thank's so very much for listening & have a blessed day!!!
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    Good Morning Flowers. Welcome to WHL! I am so sorry that you are having such a difficult time. I wish I could tell you that your story was unique but sadly too many people go through the same thing. Lupus can be a terribly difficult disease to diagnose and many of us go for years waiting for a diagnosis. I don't know if it will help make you feel better but at least it sounds like someone is going to start you on meds (which will help some) with or without a name.

    The first thing to understand is that the fear and emotional turmoil that you are feeling is normal. Not only is it normal because of the situation that you are in it is normal for anyone with and autoimmune disorder and especially one with CNS involvement. Not only are you dealing with all the uncertainty of the issues at hand the disease itself and the brain involvement can cause depression, fear, a multitude of other emotional/mental issues.

    I know that it is difficult to deal with the uncertainty of what is happening to you but the good news is that you found us and you are no longer alone. You have come to a wonderful place with fabulous people who will be here to answer questions, listen, talk, laugh and just be here for you as you find your way through this difficult journey.

    Please feel free to look through the old posts or start new ones if you wish. I look forward to getting to know you and try to relax if you can
    Mari

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

    ~Winston Churchill~







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    Hi Luvmyflowers,

    Sorry to hear the length of time you have waited for the 'monster' to be named and for your suffering,but so glad it has been named n shamed!! At last the right treatment can be given and peace of mind knowing what it is.So many of us here have waited many years and some ,like me still going through the many appointments trying to get a 'name'to the monster.Oh what a difference that can be!!!! Like a final finger up to the medics and you shouting ''See i told you i was ill'' or should i say thats what i would be shouting lol.
    I am so sad you are sick,but now is the time for healing slowly or just getting or trying to get under control your symptoms.It will take time. You have come to the best forum as all the members here sooooooooooo understand what you are going through.They are very kind and caring and will always be there for you.Have a look round at the 'stickys' for info or just keep popping back in and we will all gather round and support you.
    How are you feeling today? Hope you are doing ok.We are here always,just leave us a message here.
    Gentle hugs n 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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    Good afternoon Tgal,

    Thank you so much for the warm welcome, and kind word's. And i am sooo glad i found this
    forum and you guy's. becuse before i had no one to talk to, that is going through as you said
    the fear, sadness, sickness and pain and totaly emotional turmoil and trying to accept and
    adjust to the new you. It is a very big pill to swallow!

    I must still be in the greeving process becuse i have never cryed so much in my whole life
    for 3 wk's now. I take it one day at a time the dx of cns lupus & sjogrens is sinking in a bit
    maby only one of them is cns. But now it's the anxiety & fear of the unknown of how bad
    it is when i go for my results tue.

    And you are so right it's so sad that there are millions of us in the same fix, either in limbo for years, or by the time you do find a good dr. your disease is progressed so it's a shame.

    I AM SO BLESSED TO HAVE FOUND YOU GUY'S!!!
    Hope you are well today & thanks so much for takeing your time to help me!!!
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    Good afternoon angel,
    Thank's so verry much, and yes it was a big relief to finaly have a name to what has been makeing me so sick.
    And bless your heart!, I can say i know about the dr. appt's . They seem never ending, and with
    every appt you have hopes of maby this is it! there gona figure it out and have a name to what i have and maby some med's that will help me. It dose get very old after several years
    But dont you give up!!!! I just turned 50 and have been sick with this no telling how long!

    I pray they soon get your's figured out! And yes girl i did feel like telling them see i told you i was very sick and also angry and hurt they could take your money and just not realy care.
    I am in some pain today & off balance a bit, thanks for asking.
    Probely the anxiety about what my test will revil tue. But at least i finaly know some of what's going on and have some answers. And trying to figure out about the meds reumy spoke about
    not to crazey about the more toxic ones he spoke of, maby it will be where i can try plaquinel again i think it's least toxic, just keep your eyes checked.

    Gentle Hug's & Love to you also, hope you have a pain free day, thank's for your time Diane
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    Goodluck for Tuesday hope all goes well.Let us know when you find out.I am on plaqunil and for me it took nearly a year before i felt anything,but it does help.Many of us here take it so feel free to ask and look for the plaqunil posts as there are a few.Gives you an idea how it helps others.You try and rest until tuesday.
    I am glad its helped you having the culprits name and yes i long to know.I was once told i had it but due to no positive bloods i have to wait.I also have srjogrens,raynards as many here do.
    Catch up with you soon.
    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

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    Hello LUVMYFLOWERS,
    Welcome to the WHL and sorry to hear you have so many symptoms simular to myself, i have Raynauds/sjogren's disease and many more but like yourself, i won't know much more till January as i have more blood results to be confirmed and also x-rays like yourself but we do know what your going through and it can become very distressing but we all handle it in different ways.
    I do hope the out look on the 21st December will help the Doctor's to let you know more and what the outcome will be and there's so many threads for you to view, where so many of us all have problems the same.

    Luv Terri xxx
    Last edited by Peridot_Gem; 12-19-2010 at 04:55 PM.

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