Joined: 15 May 2004 Posts: 5 Location: New Zealand
Spots In Vision Posted: 05-15-04 09:41am
Hi everyone,
i'm new to this forum and thought I would
run the following problem by you all and
see if anyone has come across the same
thing!
I have lupus (since 17, now 25), and over
the past 6 months I have also had spots in
my vision. The first one got really bad
and I needed prednisone to reduce the
inflammation at the back of my eye before
I lost my eyesight. The opthamologist
believes it is 'posterior scleritis' and
also believes that it is related to my
lupus as I was also suffering from
arthritis in my hands and other joints.
I wasn't on any medication at the time
although I am now on prednisone,
plaquenil, and cartia. Other lupus
symptoms I have had include fatigue, hair
loss and low platelets (along with other
blood anomolies which I am sure you are
all used to!) and I have cutaneous
vasculitis on my fingers, feet and ears
which is very painful and I need to wear
gloves just to carry out everyday
activities...
I would be greatful to hear from anyone
who has experienced a similar combination
of symptoms. I'm hoping to determine
what may have triggered this latest flare
up - previously I had been in remission
for about 4 years!
Any help, information or ideas would be
greatly appreciated
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mia
Experienced User , Rather EHEALTHy
Joined: 25 Jan 2004 Posts: 147 Location: dallas
Spot Posted: 05-15-04 20:17pm
Hi emonon
i had a flare in october for the first
time in 7 years and started experiencing
similar syptoms. So after 3 mri's, a
visit to a neurologist, rheumatologist,
internist, opthamologist and a pain
management doctor, they determined that
the migrains I had had all my life had
taked on a new aspect, occular migrains.
You can have the light disturbances
without the head pain. It can still make
you seem off balance or dizzy, nauseous
and be light sensative. But somtimes,
just white blobs of light floating in your
vision. You might ask one of your
doctors about this.
Good luck
mia
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mia
Experienced User , Rather EHEALTHy
Joined: 25 Jan 2004 Posts: 147 Location: dallas
Spot Posted: 05-15-04 20:21pm
Hi emonon
i had a flare in october for the first
time in 7 years and started experiencing
similar syptoms. So after 3 mri's, a
visit to a neurologist, rheumatologist,
internist, opthamologist and a pain
management doctor, they determined that
the migrains I had had all my life had
taked on a new aspect, occular migrains.
You can have the light disturbances
without the head pain. It can still make
you seem off balance or dizzy, nauseous
and be light sensative. But somtimes,
just white blobs of light floating in your
vision. You might ask one of your
doctors about this.
Just a note about plaquenil, it can cause
eye problems and you should be seeing and
opthamologist every 6 months for and eye
exam!
Good luck
mia
|
emanon
New User, Becoming EHEALTHy
Joined: 15 May 2004 Posts: 5 Location: New Zealand
Have Had Those Too! Posted: 05-16-04 07:28am
Hi mia,
thanks for responding
i experienced a few ocular migraines as a
child and have also had one recently
(flashing and blind spots in my vision
then a terrible headache which makes me
vomit). I hate them!! But I found the
best thing to do is get to bed straight
away and keep the room as dark as possible
(had to resort to sticking my head under
the blankets a few times!). If you're
lucky enough, you fall asleep and sleep
through the pain of the migraine.
Unfortunately my recent problem is a
little different. The spots stay there
and are always there, getting bigger,
until I take prednisone (or up the dose
which I hate doing!). There are no other
symptoms like a headache but because of
these spots I am seeing an opthamologist
regularly so I don't have to worry about
getting the extra eye exams.
Are ocular migraines a common symptom of
lupus?
Does anyone know?
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Tallwoman
Experienced User , Rather EHEALTHy
Joined: 17 Apr 2004 Posts: 59 Location: US
I Get Weird Migraines Posted: 05-17-04 00:25am
At least that's what they were diagnosed
as. They start out with parts of the
picture of my visual field missing. For
example, i'm looking at writing a check,
and I can't see the date in my visual
field, until I look away, and then I can
see it. That lasts a few minutes. Then I
get this small flashing light that grows.
I get this in both eyes. And it elongates
and looks like an arc (or a brilliant
snake) that pulsates and takes a good part
of my visual field. The whole process
lasts about fifteen minutes. It might be
followed by a slight headache. My doctors
have told me that i'm lucky, that most
people get horrific headaches with these.
I had the first one when I was 18. And
they were very rare for many years. I'd
have one maybe twice a year. Now, I have
them every week, sometimes three or four
times a week.
These visual auras have changed more
recently too since a huge flare two years
ago. Sometimes this dark field comes into
my line of vision. This one is just in
one eye. It lasts for about thirty
seconds and then slips aways again. But I
get a strange pressure sensation with it,
and lots of little, what I call,
"lightning flashes." i've worried that it
was my retina tearing. But i've had it
all checked out. The opthalmologist said
everything looks fine in my eyes. And
that this phenomena must be ocular
migraines. I worry though. I see
floaters all day long, worse in bright
sunny weather. And the lighting flashes
are with me every day as well.
It's a scary thing when your vision is
affected like this.
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 05-18-04 07:30am
Hi emanon! Welcome to the lupus forum!
i've experienced black dots...And loss of
peripheral vision for a while. I've had
countless neurological and opthamological
studies. My latest i'll be getting back
next month. They've found a few things
and even suspect a few more. As I
continue to find...A lot of this takes
time.
keep us informed if what you learn!
Please...
Hugs,
ladybrannon
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Tallwoman
Experienced User , Rather EHEALTHy
Joined: 17 Apr 2004 Posts: 59 Location: US
Black Dots Posted: 05-18-04 21:33pm
Ladybrannon what do those black dots look
like? I sometimes wake up with a blackish
or gray dot in front of my left eye. It's
right in the center of my vision. As I
get up and move around, the dot goes away.
The opthalmologist could find nothing
wrong. But I worry because my father is
blind.
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 05-19-04 12:03pm
They literally are black dots that take
out small sections of my vision for random
amounts of time. Sometimes they are just
there and other times they make me feel
incredibly ill.
I'll let you know what I find out from
this latest round of tests!
hugs,
ladybrannon
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Tallwoman
Experienced User , Rather EHEALTHy
Joined: 17 Apr 2004 Posts: 59 Location: US
Thanks For Being Willing to Share With Us Posted: 05-19-04 21:13pm
It helps to know what others are dealing
with. I saw the rheumatologist yesterday.
After listening to my history he asked,
"has anyone ever told you you had lupus?"
he also is checking into some other
diseases like waggoners' disease and
hepatitis c. At first he thought my
symptoms sounded like anticardiolipin
disorder. But saw that the neurologist
already did that test which was normal.
He was particularly interested in my
severe preeclampsia diagnosis 20 years
ago. Said that five months gestation was
much too early for that diagnosis. That's
when he asked about the lupus. So, let's
hope for an accurate diagnosis of whatever
is going on.
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el725
New User, Becoming EHEALTHy
Joined: 30 Sep 2003 Posts: 49 Location: Florida
Preeclampsia Posted: 05-19-04 22:43pm
Hi tallwoman. I read your post about your
doctor's interest in your preeclampsia 20
yrs. Ago. I had a similar experience 18
years ago. They came up with a medical
journal article that accounted for all of
my odd symptoms (hemolysis, elevated liver
enzymes, low platelets, & protein in
the urine). The syndrome was called
hellp. The final stage of the syndrome
was preeclampsia. They took my baby at 7
months. I had been ill w/ this syndrome
for over a month before they diagnosed it.
They never tied it to lupus, though.
It was another 15 yrs. Of odd illnesses
before I got the diagnosis. Looking
back, of course, it's obvious to me I had
the lupus then. I wonder how many others
have had the same experience with a
pregnancy.
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Tallwoman
Experienced User , Rather EHEALTHy
Joined: 17 Apr 2004 Posts: 59 Location: US
Hi Lizbet, Thanks For Your Post. Posted: 05-20-04 09:57am
That's interesting. I'll have to look up
this syndrome. But I don't remember
anything going on with my liver at the
time. But you never know. They were
mostly concerned with my liver and my
lungs. I had a pneumothorax (which they
thought was aspiration during surgery to
terminate my pregnancy). I was on a
ventilator for four days. The reason the
rheumy is looking for hepatitis c is
because they gave me a blood transfusion
at the time. Do you remember everything
that happened with your preeclampsia
experience? I had high high blood
pressures 210/120. Went blind. I already
mentioned the pneumothorax and kidneys
shutting down.
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el725
New User, Becoming EHEALTHy
Joined: 30 Sep 2003 Posts: 49 Location: Florida
Preeclampsia Posted: 05-20-04 11:06am
Hi tallwoman,
yes, I remember everything pretty clearly,
although it seems like I couldn't really
have gone through all of that. I
hesitate to tell you how high my blood
pressure went because it will sound like
i'm lying. I was on a monitor that
displayed the read out every few minutes.
My husband was right by my side & he
saw it too. I'm sure that when doctors
look at my medical records they are sure
it is a misprint. It was 260/174--i
swear! It's nothing short of a miracle
that I didn't have a stroke or heart
attack and die! For about a month before
they took my baby I had horrible pain from
my liver dysfunction. I also had some
kidney problems. My blood wouldn't clot
& I remember having a bunch of little
red dots all over my arms and legs where
blood vessels had burst under the skin.
I was so exhausted that i'd be up for
about 10 minutes and then would have to
sleep for hours. I started swelling
terribly by the end of the month. I just
happened to have a doctor's appt. The day
my bp skyrocketed. I had felt so lousy
that I didn't notice a difference that
day. I'm sure I would have died right
there at home that day if I hadn't gone
into the doctor's office. He sent me
right to the hospital--trying not to alarm
me or upset me. For as bad as everything
was, I was so fortunate that I bounced
back to my version of normal within a
couple of months after they delivered the
baby. And even though we had plenty of
scares, my baby had no lasting problems.
It's hard to believe that was 18 yrs.
Ago. As a matter of fact, this friday,
the 21 is my girl's 18th birthday &
she graduates from high school on the same
day! I have a lot to be thankful for.
