I have lupus, and have had since I was 14.
I had a major stroke a few months ago.
Has anyone here experienced this or do you
know someone. Also, my kidneys don't
work so well. I'm on a lot of
chemo(cytoxan) and prednison and various
other drugs. The stroke was due to a
blood clot in my brain. I'm 26
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Tallwoman
Experienced User , Rather EHEALTHy
Joined: 17 Apr 2004 Posts: 59 Location: US
Mini Strokes Posted: 05-17-04 00:33am
My brain mri looks like i've suffered from
tiny strokes (or tias) at least that's
what my neurologist has told me. But i'm
too young to have that kind of thing. I
have the symptoms that go with it however.
Numbness in my hand and sometimes my
toes. Or, it could be vasculitis says the
radiologist.
So, i'm in the midst of being diagnosed.
Have been going through this for two years
now.
Are they sure what you had was a stroke
and not vasculitis? Vasculitis in the
brain is one of those things that people
with lupus can get and they (vasculitis
and tias) look the same on an mri.
Sounds like your doctors are doing what
they can to help you.
May I ask what your presenting symptoms of
lupus were at the age of 14? I'm just
wondering. I think I have lupus, and I
think i've had it most of my life, but
it's mostly been mild except for a
horrible flare during a pregnancy a lot of
years ago. The docs back then thought it
was preeclampsia, but it was severe in
that my kidsneys shut down and I had a
pneumothorax. I recovered from that and
was fine for many years.
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property2677
New User, Becoming EHEALTHy
Joined: 15 May 2004 Posts: 3 Location: South
Re: Mini Strokes Posted: 05-17-04 05:27am
The doctors are sure I had a major stroke.
I had to relearn to walk. I could not
use the left side of my body. I had been
having spottin in my vision right before
the stroke. The mri proved I had a
stroke toward the back of my brain. The
first symptom of lupus I had was the malar
rash on my face. I also had lupus
nephritis...And still do. I have
seizures due to the lupus affecting my
brain. I have bad osteoporosis because
of the predinisone. It took my doctors
two years to officially diagnose me.
quote="tallwoman"]my brain mri looks like
i've suffered from tiny strokes (or tias)
at least that's what my neurologist has
told me. But i'm too young to have that
kind of thing. I have the symptoms that
go with it however. Numbness in my hand
and sometimes my toes. Or, it could be
vasculitis says the radiologist.
So, i'm in the midst of being diagnosed.
Have been going through this for two years
now.
Are they sure what you had was a stroke
and not vasculitis? Vasculitis in the
brain is one of those things that people
with lupus can get and they (vasculitis
and tias) look the same on an mri.
Sounds like your doctors are doing what
they can to help you.
May I ask what your presenting symptoms of
lupus were at the age of 14? I'm just
wondering. I think I have lupus, and I
think i've had it most of my life, but
it's mostly been mild except for a
horrible flare during a pregnancy a lot of
years ago. The docs back then thought it
was preeclampsia, but it was severe in
that my kidsneys shut down and I had a
pneumothorax. I recovered from that and
was fine for many years.[/quote]
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Tallwoman
Experienced User , Rather EHEALTHy
Joined: 17 Apr 2004 Posts: 59 Location: US
I'm Sorry to Hear You've Had to Deal With So Much Posted: 05-17-04 10:35am
With this disease at such a young age.
Was the stroke related to the lupus? Or
was it just an additional thing? I worry
about having a major stroke too. We can
live without a lot of things in our
bodies, including our kidneys with the
help of dialygis. But when our brains are
affected, it really is a scary thing,
isn't it? I don't like to worry, and I
want to live my life as if there's nothing
wrong. But sometimes, when i'm driving, I
just pray, god don't let anything happen
while i'm driving. I don't want to hurt
anybody else. But what can I do? Stop
working and go on disability because of
"what if"? They don't award disability
for "what if." and so, I continue day by
day and hope and pray for the best.
My neurologist put me on aspirin therapy.
I take a baby aspirin every day. But I
worry about what it might do to my
kidneys. My urine is showing blood in it.
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property2677
New User, Becoming EHEALTHy
Joined: 15 May 2004 Posts: 3 Location: South
Re: I'm Sorry to Hear You've Had to Deal With So Much Posted: 05-18-04 02:08am
I don't like to worry either. The stroke
was a result of the anticardiolipin
syndrom related to lupus. I ignored my
doctors when they told me to take my
coumadin, prednisone ect... I'll take the
meds from now on. You are right about
the driving. I can't have someone haul
me around everywhere and I am definately
not quitting work. Technically I am not
supposed to drive, but the stroke affected
my left side, so I don't see a problem.
I drive well. How long have you been
dealing with the symptoms?? Are you in a
flare-up now or in remission??
tallwoman
wrote:
with this disease at such a
young age. Was the stroke related to the
lupus? Or was it just an additional
thing? I worry about having a major
stroke too. We can live without a lot of
things in our bodies, including our
kidneys with the help of dialygis. But
when our brains are affected, it really is
a scary thing, isn't it? I don't like to
worry, and I want to live my life as if
there's nothing wrong. But sometimes,
when i'm driving, I just pray, god don't
let anything happen while i'm driving. I
don't want to hurt anybody else. But
what can I do? Stop working and go on
disability because of "what if"? They
don't award disability for "what if." and
so, I continue day by day and hope and
pray for the best.
My neurologist put me on aspirin therapy.
I take a baby aspirin every day. But I
worry about what it might do to my
kidneys. My urine is showing blood in
it.
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 05-18-04 07:28am
Strokes are something that someone with
the anticoagulant and other issues do
sometmes need to worry about.
I am so sorry you've had to deal with so
much! It's amazing to hear what lupies go
through...
As for driving, please be careful. I know
I had to stop driving for almost a year
because of complications from lupus...It
wasn't easy. But I did for my safety and
the safety of others.
Hugs,
ladybrannon
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Strokes Posted: 05-24-04 11:17am
I've also had a stroke a few years ago.
My rh and neuro-drs.,both told me it was
caused from having lupus.I still sufer
from the effects of it.I have spoken of it
in past post,so I won't go in to all of it
again,but it is a scary thing!!
sharon
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lwyswright
New User, Becoming EHEALTHy
Joined: 18 Jun 2004 Posts: 18 Location: Arizona
Lupus And Blood Clots. Posted: 06-20-04 14:19pm
I have factor v leiden disorder, protein c
deficiency and homeostasis thrombosis.
All of these things are common in lupus
sufferers and are responsible for blood
clots. My family has all been tested for
these disorders because they are genetic.
That is how I found out I had lupus. I
have all the disorders but my brothers and
sister and my children only have one of
them. I have to inject heprin every time
I travel for more then an hour, take
aspirin daily and also folic acid and b12.
These were all prescribed by my
hemotologist.
I also have severe migraines so I am
watched carefully by a nuerologist as
well. I am on a medication that opens
the vessels in my brain during the
headaches to keep any clots from entering
my brain, if there are any.
