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

  1. #11
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    Hi LUVMYFLOWERS,
    Yes we're going through alot the same and the numbness started on me about the same time. I've added to several threads more or less everything in that i've had in the last 24yrs but now at 42 it's realy taking it out on my body, at the age of 5yrs old i started having symptoms but now it's realy progressing. When i'm typing i have to wear gloves at the moment my hands are paining me all flared up and purplish/Red not cuts down to the bones as yet, as last year they was in a state, i use steroid creams but they only work so far then the skin specialist moves me on and the cream for my face god it burns it out now, you'd think i'd been stuck in the oven for hours, so at the mo just nivea cream i'm able to use to help the dry skin till i see him again.
    I've been having a rough time of it lately coping, with having manic depression i'm more down than up and 60% of the time i'm blurting my eyes out, so i realy do know how you feel.
    I realy hope this new rheumo specialist can realy help you out, as i said before i don't see mine till january but he's took enough blood for transfusions but i want answers from the tests that have been taken more recentley. When i mentioned lady or cow being around loads of idiots who are surposed to be so called Doctor's who have diagnosed me wrong on several occasions then i've had to suffer with withdrawal symptoms, i'm not took for a fool no more and i out burst very quickly if i'm being messed about.

    So hopefully come tomorrow, you should have some news one way or another and i realy do wish you the very best.

    Luv Terri xxx

  2. #12
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    hi luvmyflowers,

    i love my flowers too. I see you are in mississippi. I was raised in alabama, and lots of my family still lives in ms....i now live in georgia.

    as you have seen, this is an incredible forum with so many caring members. I am very glad that you found this group, because, this is where you will find the information to help you get past this very scary place in your life. We will hold your hand, and help you learn how to live with this seemingly devastating diagnosis.

    Lupus, Sjorgren's, Rheumatoid arthritis, Raynaulds....the list goes on....are all very frightening diseases, and yes, they are progressive and can cause permanent damage. BUT, there are ways to slow down the progression, and there are ways to reduce the daily interruptions that these auto immune diseases can cause.

    As far as medication, the dr. will probably start you out on Plaquenil (has a really long name, but too long for my lupus brain to remember). This medication can cause stomach cramps and discomfort, but these side effects will subside with time. Also, Plaquenil can take 5 or 6 weeks to work at its maximum, so it is important that you give it a little time.

    After the Plaquenil, your dr. might offer you Prednisone (steroids), or immune suppressent drugs such as methotrexate. I take a combination of Palquenil and MTX because my system can not tolerate steroids. The immune suppressent drugs slow down your immune system, in an effort to slow down the attacks of our antibodies. This combination works pretty well for me, but i still struggle with flares, and just yukky days.

    You can find a lot of information here at the forum about the different drugs, so ready some of the earlier threads. this will help you decide how you want to structure your treatment option.

    In addition to these treatments, I have a medical bag with different medications for the different attacks on my body. I have some really good headache medication, muscle relaxers, ointments for sores, etc. Do not hesitate to request help whenever you are being attacked. I also have special facial cream that helps with the butterfly rash.

    Your dr. might also prescribe folic acid....this will help with mouth sores.

    Please stop crying, try not to worry....stress is a huge trigger for flares, and could just make you feel even worse. Try to avoid the sun and flourescent lighting, get plenty of rest, and learn how to accept single tasking....multiple tasking can be too much for our systems to handle.

    Any time that you have any questions, please jump on whl and your "family of the sky" will be here to help.

    again, welcome, so glad you have chosen to join our family.
    Phyllis

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  4. #13
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    Hi Mountaindreamer,
    Thank you for the warm helpful welcome, and nice to meet you! Please excuse my spelling
    it is a new gift of lupus,sjogrens,ryanuads or the lesions in my brain, i get my letters all jumbled up and backwards sometime i catch it & sometimes not.
    And yes this is the most incredible ,helpful, & careing forum i have ever found!!! And you
    all have surley put some SUNSHINE back in my darkest day! A nd i am so blessed to have
    found you guy's & i thank you all.

    And yes my new reumy mentioned plaquneil i belive he wants to try it first just have to see what lumbar puncture and blood work revels if it's attacking my kidneys and heart , or lungs
    Old reumy put me on plequenil before he didnt know what i had he only said mixed connected
    tissue disease poss lupupus or sjogrens took it for 6 weeks and suddenly my skin felt like it
    was on fire when i called reumy he said stop takeing it.
    But i rather try it again than the more toxic ones my new reumy mentioned,

    I have been on 5mg predisone for 5 months now & new reumy said it's not good for me to be
    on it so long becuse of side affects to bones etc. But till last 3 week it has been only thing helping keep me going and helping with the severe knee and leg & back pain, juess i got
    so upset over diagnosis of lupus & sjogerns gone to my brain this is the worsest flair ever
    100 fever every evening,severe aching joint pain,fatigue balance issues ,stomach pain
    lost down to 106.9 lbs and never been that low on my weight...

    The i guess funny part have to laugh to keep from crying!! I cleaned my dryer lint thingy
    out and was tryin to put clean washed clothes in dryer to dry them, And cleaned the lint
    tray out put it back in shut the dryer door & turned it on and was dryin up a storm, TILL
    I LOOKED OVER AT WASHER WITH THE LID OPEN AND CLEAN WET CLOTHES WAS STILL IN
    THE WASHER ! LOL!!!!
    This brain thing is the gift that keeps on giving!!! lol
    And yes i do have a goody bag like you steroid mouth paste for mouth ulcers, steroid cream for weard skin sores and rashes, muscel relaxers for the new weard muscle spasams that totaly knock me down in a ball, pain med's that use to take the edge off i guess my disease is so bad now its going through it & the predisone, nerve meds for the raceing heart thing they say it tachartia now due to lupus or sjogrens & im on neurotin 600 mg at night for the nerve pain from
    damaged nerves, and norvasc for ryanuads where my fingers were spliting open & getting infected & wouldent ger well ,it has worked very well thay havent got infected since i
    started takeing it thank goodness!

    I tryin to accept the new me & the new diagnosis whitch in the back of my head i knew i probly had
    The hardes thing to accept is the brain thing i get so confused with money and writeing checks now ive had to turn it over to hubby, ill write my numbers backwards and it looks right but will be wrong, at times i go to pay for gro or med,s at store and suddenly i get confused on witch card to swipe and the more i stress the more confised i get havent drove in 2 years becuse of bad virtigo and drunk head that suddenly comes with no warning, was driveing home last time it happened and was so scary trying to stay on my side & not ditch with head spining.

    New studdering, loose my words when talking, i have to use a cane now at all times but
    at least i can feel my legs a bit better and can still walk on my own! thats a blessing
    i know it can be worse and there are people worser off than than i, so i try not to complain
    much, This disease can surley stop you in your tracks & knock you down but im learning
    new ways to do things & tryin to cope with what i have & no one knows what your going
    unless they have been there them selves like you guys.
    So thankful i found you guy's!!!! You have been so much help!
    And yes i love growing my flowers and rooting them it's a stress reliver for me when im able to get out and do it , just do it now with a hat on & when the sun is behind the trees.

    I hope you have a great day Mountaindreamer!!! 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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    wow, you have really been struggling for some time now.

    sounds like you are truly in a horrible flare that has lasted for such a long time. I remember the first time i had to use a cane, i was so afraid that i would need one for the rest of my life. but, once my dr. got me past the flare, i was able to put the cane in the corner....i still have to pull it out sometimes, but now i know that it is not forever. When my flares last for a long time, and i just can't seem to get past them, my rheumy gives me a shot (brain fog will not allow me to remember the name right now)....i don't like to take this steroid injection, but it sometimes knocks me out of the flare, and then i can maintain it for awhile. So sorry that i can't remember the name....maybe someone will be ale to help out with this....

    yes, the affects on the brain are the scariest. I was a public speaker, and college teacher,,,,,,now, i have to get help to present the simplest presentation to employees....i always have someone with me who can recall the words when i get stuck...it is frightening, and frustrating....

    getting lost in the car is the worst, I have had to call for directions just to find my way back home. I know it worries my family and friends, but it is reality of this disease. We have to learn coping skills, and calling for directions is one of the skills that i have had to adopt.

    there is a wonderful story called "the spoon theory"....you can find it here in one of the older threads, or there is a website with the story....it is about making choices and how lupus limits your options. I made copies for my family to read in an effort to help them understand what i am facing. It is truly a great story, and i recommend that you read it and make a copy.

    i hope you are having a better day today....i will be here all day if you need to chat. I took my MTX shot last night, so i am having my "weekly vacation" today.
    Phyllis

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    Spoon Theory is my favorite story. It helped so many close to me get a small understanding of this disease.

    I too have become lost on the way home. I was even lost in my house once. I agree that the memory issues are the hardest part. At one time I was a very vibrant, articulate woman who spoke to attorneys on a daily basis. Now I knock on my neighbors door and forget her name when I go to ask for her. As Phyllis said, it is the reality of what we live with. It does become easier. I have a cane by the door but still can't make myself use the motorized carts in the stores even on the days I need them. I just stay home on those days. I know it is silly but I can't wrap my head around that one yet.

    Please let us know if you need to talk. Someone is usually here and as you have seen there are some great folks around
    Mari

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

    ~Winston Churchill~







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    Hello LUVMYFLOWERS,
    How did it go today seeing your Rheumy and did you get any positive results which you've been looking for, to help you know what your dealing with.

    Terri xxx
    Last edited by Peridot_Gem; 12-23-2010 at 07:01 AM.

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    oh, mari.....the motorized carts at the store are my favorite. i just ride and ignore the looks.....remember, "we don't look sick". ha ha ha
    Phyllis

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    Oh Phyllis I think I am getting there. With every new diagnoses or pain I get one step closer to throwing my middle finger (figuratively speaking) up at everyone and just riding my couch through town! LOL
    Mari

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

    ~Winston Churchill~







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    let me know when you are ready.....i can see you riding through town on your couch while telling the world what you think. ha ha ha....i would definitely join you on that couch.
    Phyllis

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    Hi Terri,
    Well been cryin & greeving again just needed time to let all the new dr. findings soak in and try to accept it. well went to visit for results with new reumy he said lumbar punct come back normal no m.s. all blood work normal as useual cant spell sorry!lol it's my new brain lol!
    Any way he said its all pointing to cns vasculitis my newest mri just 2 months from last one with dye is showing a progressing lesion load of vasculitis not a big difference from last but
    surley is progressing & when he said cns vasculitis i lost it then cause i know from what i read on it it has a very poor out come also!

    so reumy says it needs treating agressively to try & slow it down and try to get me to feeling better cause im so sick with fevers and fatigue & brain problems. So he sugest starting me
    on higher dosage of predisone i belive 40mg and Imuran im scared of the imuran, but at this point i have no choice. Says he will give me 6 months on these two drugs and keep close eye on my blood work to watch for bad side affects, after 6 months he's gonna do another mri to
    see if the med's have slowed down the lesions on my brain. If not if lesions continue then
    my only next choise will be the more toxic i belive it is METHOTREXATE i think that is it.

    He says there is an underlying corprate he belives it has to be sle or either sjogrens
    for some reasen its not showing up in blood work so he has a lip biopsy & a skin biopsy
    sceduled after christmas to try & find if it lupus or sjogrens causeing the vasculutis
    says he wants to know, i said i did also! he's giveing me 3 weeks to soak the news in & figure all this out then start on new drugs im so scared i tryed to get out of him how long i had
    to live with this vasculitis progressing as fast as it was and would it only get worse
    only got from him he thinks the 2 drugs he mentioned to try for 6 months if i was not better his next choice for me would be the methotrexate so from that i figured it was already fairley
    far progressed. so i guess ill studdy up on the imuran i belive i say it makes you realy sick
    i also have diabetes so i wory higher predisone will make my sugar go up but i in between
    a rock and a hard place right not so i have no choice but to go for it in hopes of slowing
    the vasculitis down, already have dementia form it and short term memory loss
    need to keep what little i have left lol... go back to my local reumy jan 4th with lip & skin results and treatment plan my new reumy is going to guide her on what to do and how to give my meds so i want have to drive so far to see him. I thanked him for that long as he was going to guide her step by step and she keep him updated on me , he is for mor knoledgeable
    than she, makes me feel better any way!

    Gentle Hug's to you terri!!! hopeing you get some kind of news in jan & hope it's what your looking for & good new's !!! Love, 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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