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brandy74
Little Guppy
Joined: 09 Mar 2007
Posts: 31
Location: TX
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 Posted: Wed Apr 25, 2007 7:53 pm Post subject: Re: newbie |
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| TERIOD wrote: | not that im happy to see other people with this disease, I was finally DX in dec 06 after fighting with it for several years, and after a stroke in 2003, ive had to quit working as a mechanic and going to school, at 44 no one seems to want to hire and i have to be truthful about whats going on with me healthwise, with all the drugs im on, its hard sometimes to remember what i even went to school for!!, im six months in on cellcept therapy and there doesnt appear to be any change except for bp and proteins, has there been any luck out there with ssd, like ive read in other posts, it seems as tho many people out there dont understand what this is like, im not liking the reality of this disease, what do some of you do to get over the mindset????  |
I think a lot of people have it for yrs. before it's diagnosed partly maybe an even bigger part is becouse it's like so many others and it's so hard to diagnose.what kind of stroke did you have?I had a "brain steam"stroke about 12 yrs. ago.I'm currently on cellept have been for about 2-3 yrs. and if i wasnt on it I think I'd be in trouble.sorry to hear it's not working for you. |
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TERIOD
Labrador
Joined: 25 Apr 2007
Posts: 305
Location: Fair Oaks California
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| Posted: Thu Apr 26, 2007 8:03 am Post subject: |
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I too had a brain stem stroke,with major ringing in the ears, nausea and dizziness leading up to it, well i cant say that i dont know the cellcept isnt working since im not even sure what its supposed to be doing?? although the tests show good numbers, i still feel like ive been hit by a truck, the docs tell me ill be going through this treatment for at least a year, i guess from what you say, it could be longer tho?? do you work?? i cant seem to gain enough energy to go back to work
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Fair Oaks California |
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brandy74
Little Guppy
Joined: 09 Mar 2007
Posts: 31
Location: TX
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| Posted: Thu Apr 26, 2007 2:57 pm Post subject: |
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| TERIOD wrote: | | I too had a brain stem stroke,with major ringing in the ears, nausea and dizziness leading up to it, well i cant say that i dont know the cellcept isnt working since im not even sure what its supposed to be doing?? although the tests show good numbers, i still feel like ive been hit by a truck, the docs tell me ill be going through this treatment for at least a year, i guess from what you say, it could be longer tho?? do you work?? i cant seem to gain enough energy to go back to work |
OMG someone else who had a brainsteam stroke no one i've ever talked to has had one.leading up to mine I was dizzy,headaches,and paralized on one side.i was always going to the e.r. for those but they NEVER found anything and did i tell ya finally one night they admitted me and that night in the hospital I had the stroke.isnt that crazy!the main thing the celecept is suppose to do is keep the lupus under control.no, i dont work.i used to babysit my nieces&nepews.but no I've never worked after the stroke it left me with a foot drop that I never got rid of.if you dont have to DONT push yourself to go back to work.to me that just makes things for you harder(I mean more tired). |
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brandy74
Little Guppy
Joined: 09 Mar 2007
Posts: 31
Location: TX
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| Posted: Thu Apr 26, 2007 4:15 pm Post subject: |
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| forgot to add after the stroke i had I was on cytoxin for about 18 months.they tryed it in pill form but I just dont drink water very well at all and thats one thing they said you HAVE to do so they put me on I.V. form with anti nausea med.thank-god I only had to have it every month but man talk about worn out it would take me about all that time to recop then have to go back. |
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TERIOD
Labrador
Joined: 25 Apr 2007
Posts: 305
Location: Fair Oaks California
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| Posted: Thu Apr 26, 2007 4:25 pm Post subject: stroke |
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thats pretty much what happened to me, i kept going to er and they couldnt find anhy thing wrong after blood tests, ekg's, spinal taps, and anything else they could throw at me, until one day i stroked out then everything went away, no leftovers for, but for quite along time after it i did nothing but vicodin and sleep
no talk about cytoxin yet so maybe things are workin like they should
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Fair Oaks California |
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brandy74
Little Guppy
Joined: 09 Mar 2007
Posts: 31
Location: TX
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| Posted: Thu Apr 26, 2007 7:16 pm Post subject: |
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isnt that a *sometimes angry female* when you go in and YOU know somethings wrong but they cant fin anything wrong.  |
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TERIOD
Labrador
Joined: 25 Apr 2007
Posts: 305
Location: Fair Oaks California
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| Posted: Thu Apr 26, 2007 8:00 pm Post subject: hehe |
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HEHE, ya it was but overall for a VA hospital i get very decent care, the treatment and care i get so far exceeds any private organizations ive dealt with so far, i guess im one of the lucky few that havent had to deal with bad va hospitals
*sometimes angry female* i like the way the forum changes words
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Brian0025
Little Guppy
Joined: 24 Apr 2007
Posts: 35
Location: Phoenix, AZ
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| Posted: Fri Apr 27, 2007 12:55 am Post subject: |
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| This is Men's Forum, no? |
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utenutter
Ferret
Joined: 25 Feb 2007
Posts: 102
Location: Brisbane Australia
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| Posted: Fri Apr 27, 2007 1:24 am Post subject: |
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hello
i still hold a full time job and some days it is hard but i get through.i am probably not as sever as others though, if you need to talk about any thing i will have open ears, ha a good one.
shane |
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TERIOD
Labrador
Joined: 25 Apr 2007
Posts: 305
Location: Fair Oaks California
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| Posted: Fri Apr 27, 2007 9:22 am Post subject: |
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| Brian0025 wrote: | | This is Men's Forum, no? |
ya but i would imagine anybody's welcome
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Fair Oaks California |
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brandy74
Little Guppy
Joined: 09 Mar 2007
Posts: 31
Location: TX
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| Posted: Fri Apr 27, 2007 11:15 am Post subject: |
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sometimes angery female??????
and yes men are welcome.well it's not my board but I'm sure anyone with lupus is welcome. |
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TERIOD
Labrador
Joined: 25 Apr 2007
Posts: 305
Location: Fair Oaks California
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| Posted: Fri Apr 27, 2007 12:18 pm Post subject: |
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| brandy74 wrote: | | isnt that a *sometimes angry female* when you go in and YOU know somethings wrong but they cant fin anything wrong. |
like most forums when you type certain words, the forums will automatically change them to a more politically correct statement, since you dont work do you collect ssdi?? ive been denied once and am currently under reconsideration, looking for tips
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Fair Oaks California |
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brandy74
Little Guppy
Joined: 09 Mar 2007
Posts: 31
Location: TX
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| Posted: Fri Apr 27, 2007 2:14 pm Post subject: |
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| yeah I collect ssi or whatever it is. |
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Morpheus
House Cat
Joined: 15 Mar 2005
Posts: 153
Location: South Africa
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| Posted: Sun May 13, 2007 11:38 pm Post subject: |
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Hi all I'm 26 from south africa, and have had lupus for nearly 12 years
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I intend to live forever, so far so good  |
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utenutter
Ferret
Joined: 25 Feb 2007
Posts: 102
Location: Brisbane Australia
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| Posted: Mon May 14, 2007 12:09 am Post subject: |
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Well over all there aint to many of us on here that are male, i knew it was rare in males but not this rare, unless it is just not to many males have found this website.
hello morpheus, how are you, do you still hold a job at the moment? what are your interests?
shane |
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