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Home > Archive > Lupus Support > July 2006 > Lyndal's been in hospital
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Lyndal's been in hospital
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| Lyndal 2006-07-25, 8:26 am |
| Hi gang
Just thought I'd touh base...got homr tonight after 10 days in
hospital.Although strictly speaking I have been diagnosed with primary
antiphospholipid syndrome and not lupus, it is starting to behave more like
it. I thought I was having TIAs but ended up in ICU with autoimmune
cerebritis / encephalitis. I am already on Imuran and warfarin but over the
past few days have had 2,000mg IV methylprednisone so I feel great now!!
Extra hiccup, my INR freaked out- peaked at 13.6 - so that has taken time to
settle.
Anyway, I'm home today. I have some residual cerebellar damage, we are
aiming my INR higher (goal 3.5) and I am on long term steroids (25mg
prednisone for the moment). But hey, I'm here to tell the tale!!!
Hope you all havent melted in the last week...
Lyndal
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| Lyndal, Glad that you are here to report to us....Must have been scarey as
Heck...
Sorry you are on such a high dose of Steroids..But the alternative...Well so
goes the EVIL drug...
And you will have all kinds of energy...
Praying that everything gets back into place...And you feel human again...
Hugs Cindy
"Lyndal" <lyndal_pn@iprimus.com.au> wrote in message
news:44c5de93_1@news.iprimus.com.au...
> Hi gang
> Just thought I'd touh base...got homr tonight after 10 days in
> hospital.Although strictly speaking I have been diagnosed with primary
> antiphospholipid syndrome and not lupus, it is starting to behave more
like
> it. I thought I was having TIAs but ended up in ICU with autoimmune
> cerebritis / encephalitis. I am already on Imuran and warfarin but over
the
> past few days have had 2,000mg IV methylprednisone so I feel great now!!
> Extra hiccup, my INR freaked out- peaked at 13.6 - so that has taken time
to
> settle.
>
> Anyway, I'm home today. I have some residual cerebellar damage, we are
> aiming my INR higher (goal 3.5) and I am on long term steroids (25mg
> prednisone for the moment). But hey, I'm here to tell the tale!!!
>
> Hope you all havent melted in the last week...
> Lyndal
>
>
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| Shelagh 2006-07-25, 4:28 pm |
| Glad to hear a diagnosis on those symptoms as well as some treatment on =
board for you! you had me worried LPN!
That is 'bad' news I know, but at the same time you can be treated and =
it is manageable yes? and think of the energy you will have lol!
I am so glad you finally got into hospital and all, as it is what I was =
considering re possible CNS/lupus problems as opposed to your TIAs=20
<I knew you had APS and not lupus but your symptoms sounded 'fishy' to =
me>
and, I know you are the doc and all BUT you weren't as worried as I =
thought you 'should be' over what all you were telling us was going on, =
and so I figured that maybe the symptoms were maybe just a bit different =
than your previous ones with your TIAs, and so leading you to believe =
that they weren't as urgent?? mistakenly!!=20
Anyhow I WAS worried and am so relieved that you are now being treated=20
as my first instinct was to 'y/tell' you to get your butt into the ER ~ =
NOW!! but somehow I knew it wouldn't change your mind re your =
priorities... so kept my mouth shut.....stupidly!=20
I really pray that it all stays settled down for you so you can carry =
on!
The best of well wishes your way from me,
with hugs,
Shelagh
http://clik.to/lupus
=20
"Lyndal" <lyndal_pn@iprimus.com.au> wrote in message =
news:44c5de93_1@news.iprimus.com.au...
> Hi gang
> Just thought I'd touh base...got homr tonight after 10 days in=20
> hospital.Although strictly speaking I have been diagnosed with primary =
> antiphospholipid syndrome and not lupus, it is starting to behave more =
like=20
> it. I thought I was having TIAs but ended up in ICU with autoimmune=20
> cerebritis / encephalitis. I am already on Imuran and warfarin but =
over the=20
> past few days have had 2,000mg IV methylprednisone so I feel great =
now!!=20
> Extra hiccup, my INR freaked out- peaked at 13.6 - so that has taken =
time to=20
> settle.
>=20
> Anyway, I'm home today. I have some residual cerebellar damage, we =
are=20
> aiming my INR higher (goal 3.5) and I am on long term steroids (25mg=20
> prednisone for the moment). But hey, I'm here to tell the tale!!!
>=20
> Hope you all havent melted in the last week...
> Lyndal=20
>=20
>
| |
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| In article <44c5de93_1@news.iprimus.com.au>, Lyndal
<lyndal_pn@iprimus.com.au> wrote
[
> But hey, I'm here to tell the tale!!!
Well, that's better than some of the other possibilities 
>
>Hope you all havent melted in the last week...
I have.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
| Sherry 2006-07-25, 4:28 pm |
| Lyndal,
Sorry about the 10 days in the hospital but at least you have some answers
now and are on the meds you need to be taking for the latest episode.
Melting here in the central valley with temps running around 107-113 for 10
days straight and not "cooling" off much at night or any "breeze" to speak
of. If I was a choclate bar I would be syrup for sure.
Take care and keep all of us posted on how you are doing.
Hugs,
Sherry
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| Lyndal 2006-07-25, 9:25 pm |
| Thanks everyone. Yes, I know, I was ignoring it. Probably a combination of
different symptoms, and just pig-headed stubbornness, Denial is a wonderful
thing..sometimes.
My rheumatologist has been great. He said that with completdely normal
kidneys and a negative dsDNA it isn't strictly lupus..but hell, he also says
thats really an academic argument and we're not going to wait to "tick all
the boxes" and watch me go into a coma in the meantime. If it waddles and
quacks we treat it like a duck...and worry about the breed of duck later!
(love that one!) So is it lupus?...still strictly not. Is it some
seronegative lupus like aggressive autoummune thingo---well, yeah that;ll do
for now. I'm pleased to have a doc thats more interested in getting me
better than whether everything fits perfectly in the holes.
First morning home- happy to be here. I have to fight the
prednisone....having been away a week my boys are great but the place needs
a CLEAN. I want to do it all! But if I do it all I'll be stuffed..so I have
to pace myself. I have an appointment to get my nails done at lunchtime
(good way to break up the day!) and will just try and do some washiing and
groceries. I'm going to work tomorrow, but not today or Friday.
I'm on daily INRs for the next few weeks.. bought a coaguchek XS machine
yesterday on the way home ($1,000) , so that makes life less painful than
sitting in the lab every day. Just grateful to have got out of this one
(relatively) unscathed! I am a bit stumbly with my left foot- not sure how
long that will take to clear (if ever) will just have to wait and see
Thanks again guys
Lyndal
"Lyndal" <lyndal_pn@iprimus.com.au> wrote in message
news:44c5de93_1@news.iprimus.com.au...
> Hi gang
> Just thought I'd touh base...got homr tonight after 10 days in
> hospital.Although strictly speaking I have been diagnosed with primary
> antiphospholipid syndrome and not lupus, it is starting to behave more
> like it. I thought I was having TIAs but ended up in ICU with autoimmune
> cerebritis / encephalitis. I am already on Imuran and warfarin but over
> the past few days have had 2,000mg IV methylprednisone so I feel great
> now!! Extra hiccup, my INR freaked out- peaked at 13.6 - so that has taken
> time to settle.
>
> Anyway, I'm home today. I have some residual cerebellar damage, we are
> aiming my INR higher (goal 3.5) and I am on long term steroids (25mg
> prednisone for the moment). But hey, I'm here to tell the tale!!!
>
> Hope you all havent melted in the last week...
> Lyndal
>
| |
|
| In article <44c695f6_1@news.iprimus.com.au>, Lyndal
<lyndal_pn@iprimus.com.au> wrote
[
> the place needs
>a CLEAN.
[
> I have an appointment to get my nails done
Get your priorities in order!
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
| Lyndall,
Love andd Best Wishes from Diane XX
| |
| Lyndal 2006-07-26, 8:26 am |
| They are in order...girlie order!!
Lyndal
"Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
news:3SBt3mAb7xxEFwVc@kitzbuhel.demon.co.uk...
> In article <44c695f6_1@news.iprimus.com.au>, Lyndal
> <lyndal_pn@iprimus.com.au> wrote
> [
> [
>
> Get your priorities in order!
> --
> Andy Taylor [Chair, N E Lupus Group]
> See http://www.northeastlupus.org.uk for more!
| |
| Lyndal 2006-07-26, 8:26 am |
| Thanks
"Diane" <rwh81506@bigpond.net.au> wrote in message
news:1153901945.264543.275810@75g2000cwc.googlegroups.com...
> Lyndall,
> Love andd Best Wishes from Diane XX
>
| |
| janers 2006-07-26, 8:26 am |
| Awe Lyndall. I am sorry to hear what all you been going through. I will
certainly keep you in my prayers.
I wish the best for you and please slow down. If you can from that much
cortisone...right?? WOW that is a lot.
Glad you are feeling better.
Keep in touch and please feel free to email me if you want
hugs
janers
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| Beverley 2006-07-26, 4:33 pm |
| Good for you!
(HUGS)
Bev
"Lyndal" <lyndal_pn@iprimus.com.au> wrote in message
news:44c729f2_1@news.iprimus.com.au...
> They are in order...girlie order!!
> Lyndal
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