the Eleven Crtieria For Sle Diagnosis From Www.lupus.org Posted: 10-02-03 14:06pm
The standard is that four of the eleven
must be present for a diagnosis of
lupus.
Criterion definition
malar rash:
rash over the cheeks
discoid rash:
red raised patches
photosensitivity:
reaction to sunlight, resulting in the
development of or increase in skin rash
oral ulcers:
ulcers in the nose or mouth, usually
painless
arthritis:
nonerosive arthritis involving two or more
peripheral joints (arthritis in which the
bones around the joints do not become
destroyed)
serositis pleuritis or pericarditis:
(inflammation of the lining of the lung or
heart)
renal disorder:
excessive protein in the urine (greater
than 0.5 gm/day or 3+ on test sticks)
and/or cellular casts (abnormal elements
the urine, derived from red and/or white
cells and/or kidney tubule cells)
neurologic disorder:
seizures (convulsions) and/or psychosis in
the absence of drugs or metabolic
disturbances which are known to cause such
effects
hematologic disorder:
hemolytic anemia or leukopenia (white
blood count below 4,000 cells per cubic
millimeter) or lymphopenia (less than
1,500 lymphocytes per cubic millimeter) or
thrombocytopenia (less than 100,000
platelets per cubic millimeter). The
leukopenia and lymphopenia must be
detected on two or more occasions. The
thrombocytopenia must be detected in the
absence of drugs known to induce it.
Antinuclear antibody:
positive test for antinuclear antibodies
(ana) in the absence of drugs known to
induce it.
Immunologic disorder:
positive anti-double stranded anti-dna
test, positive anti-sm test, positive
antiphospholipid antibody such as
anticardiolipin, or false positive
syphilis test (vdrl).
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Penny Fuqua
New User, Becoming EHEALTHy
Joined: 14 Jan 2004 Posts: 1 Location: Ft. Walton Beach, FL
Please Help My Daughter Posted: 01-14-04 15:52pm
My daughter is a 38 year old who has been
fighting the system for 3 years now to get
some help. She was officially dx'd with
fibromyalgia 3 years ago and began seeing
a neurologist. Her insurance was
depleted after the first series of tests
and her Dr. Subsequently stopped treating
her. She does have more than 4 of the 11
criteria for lupus. She lives in a rural
section of tennessee. She has been
trying to get help from the state with her
medical expenses so that she can get the
tests she needs run so she can begin a
real treatment plan. Tn state medical
program is not offering open enrollment at
this time. She has been denied
disability and told she could probably
continue working as a food server = ha,
obviously they have never been a waitress!
- since that is (according to the state)
a low stress job! The state legal
department has advised her that she must
become destitute in order to receive any
aid. As you know, a person who has been
dx with fibromyalgia and/or lupus is
non-insurable. That alone should make
her a candidate for state assistance.
She also has a 16 yr old child who is on
the state health plan. Her husband is a
sub-contractor for a rental property
company and makes about $8 an hour and
when she can work my daughter works for a
mortgage company owned by her aunt and
makes about $7 an hour. Tennessee says
this is too much money to qualify for aid.
They don't take into consideration any
debt, living expenses, medical expenses
incurred thus far. We are attempting to
contact state senators, representatives,
etc., any doctors we personally know, the
disability department for the state and
anyone we can think of that might be able
to help. Do you or anyone else on this
site have any suggestions? My daughter
is in flare-up condition almost constantly
and when I spoke with the lupus network, I
was told if she does not get some help
soon it will be too late and that lupus
untreated is always fatal. I am
desperate for any suggestions.
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Geraldine Pastoor
New User, Becoming EHEALTHy
Joined: 29 Jan 2004 Posts: 2 Location: Chilliwack. BC. Canada
Sle Lupus. Posted: 01-29-04 20:29pm
I was recently diagnosed. I live in
british columbia, canada. I am covered by
our medical plan for any test's that are
required. I wish the united states would
start up a similar plan so that your
daughter could get the help she needs.
I get a small pension through canada
pension, but I had to fight to get it. I
was cut off of my private disability
because they said that I could do some
sort of work.
Canada pension now looks at the job you
were doing and the money you made to look
into real type of employment equal to what
your years of experience, your age and the
amount of money you were making.
They decided that I couldn't be expected
to do the same job or find one that I
would be able to be at 8 hours a day, 5
days a week.
I also suffer from major depression,
anxiety disorder. That doesn't help lupus
at all. Stress is a big factor into flare
ups. But you can't always stop stress. I
hope you get somewhere with your
government and convince them of the help
your daughter needs.
You can show them this letter if you want.
My prayers are with you and your
daughter.
Sincerely
geraldine pastoor.
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Bolman
New User, Becoming EHEALTHy
Joined: 08 Dec 2003 Posts: 32 Location: Waren, MI
Posted: 02-02-04 06:04am
I wish I could over some advice for you'r
daughter. I am also in a similar
situation. I was denied disabilty due to
what I was told.... My education level
and my young age (25). I can not cook a
full meal with out pain and then I can not
do anything the rest of the day. But the
goverment thinks that I should still work.
You'r daughter and all of the other
citzins that fall through the cracks of
disability are in my thoughts and prayers.
The only thing I can say is, besides the
fact that I too was denied disability from
our humble government, is to hire a
lawyer.
Lupus is not one of those diseases that
jumps out at the people who decide who
gets/doesn't get disability.
Talk to an attorney, and make sure you
keep a journal of your daily activities,
pains, medications, visits to the doctor,
etc.
Good luck to all.
Clarebear
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ShiftingSands
New User, Becoming EHEALTHy
Joined: 21 Feb 2004 Posts: 16
Posted: 02-22-04 00:35am
Hi ladybrannon
what do you think about this scenario?
I was diagosed almost 15 years ago with
cfs/fibro due to positive cmv and eb
results after a bout with severe pleurisy
that left me with an unshakable fever.
Two years later, my ra came back very
high, but the rheumo says it's not
rheumatoid arthritis. The ana is exactly
on the borderline.. One point down is neg
and one point up is positive. All docs
say they don't know if it's lupus or not..
But my symptoms..Rashes, drug reactions,
extreme headaches, joint pain,
fevers..Seem to lean that way. I have
read that a high ra can, in fact, be
lupus. I didn't work for years and
finally went back two years ago full time.
It was a huge mistake because my lungs
began to get very bad after 6 months.
Like a fool, I pushed myself thinking I
could do it. Now I have severe asthma and
take three meds and a steroid inhaler on a
daily basis just to breathe. I have lots
of chest pain and my headaches have
increased, even though I cut back my work
load immensely. I have begun having more
tingling in my legs than I used to and my
wrists are more painful than before. Sore
throats and mouth sores are a common
occurence, too. The fever has never gone
away at all. I always run around 99 to
100.
Of course, fatigue is a given in any of
the autoimmune disease which are all so
similar.
I have been told that, no matter which one
a person has, the prescription is "less
stress and more rest." what a joke that
is, huh? Having the disease that no one
can see makes that virtually impossible,
doesn't it?
So,from this info, what would you say I
have.. Lupus or cfs?
Thanks,
sunny
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 03-03-04 17:58pm
Hi sunny1!
I'm not sure. Furthermore, I am not a
doctor.
however, in all of this, you have not
mentioned your doctors. Where are they in
all this? Do you feel comfortable with
them?
Have you kept a diary and given it to your
doctor for review? This can sometimes
help the doctor get a new perspective on
it all.
I hope this helps a bit! Let me know if I
can be of further help!
Hugs,
ladybrannon
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ShiftingSands
New User, Becoming EHEALTHy
Joined: 21 Feb 2004 Posts: 16
Posted: 03-04-04 10:58am
Hi lady b
my docs say lupus. I am not sure.. Just
wondered.. In your experience, if you had
heard of cfs actually being lupus instead
even with an "on the borderline" ana. I
have heard that the high ra could mean
lupus and that is the logic for the
diagnosis since ra symptoms are not
prevalent. I have also heard that one
does not have to have a high ana to be
lupus. Not a big deal in the grand scheme
of things as I am living with an "illness"
either way. Autoimmune is so hard to
diagnose that I was just wondering if this
rings a bell with you. If you have not
heard of it happening from other lupus
patients, then I am where I began. What
else is new? Hehe
i hope you are feeling well and thanks for
answering my post!
Take care,
sunny
Confused On Lupus Diagnosis Criteria Posted: 04-20-04 10:18am
Hello- i'm new to the forum. : the
past two months I have been treated for
what my doctor told me was lupus-like
syndrome and then lupus. The doctor is
back to calling it lupus. I have had
raynauds, hypothyroidism, malar rash,
photosensitivity, rheumatoid arthritis
symptoms that respond to high doses of
methylprednisone and plaquenil.
I have positive ana blood work, ulcers in
my mouth that do not resolve,
fibromyalgia, and hospitalized for 10 days
with pleurisy and pericarditis, and
asthma. I
went to see her friday for a post-hospital
follow up and told me I didn't have enough
criteria to be called lupus. My brother
is a physician in another state and he
can't figure this out either - I am
classic lupus.
not that I want to be sick, but since I
am, I want to know what this is!
Two years ago I was very weak and was send
to the research hospital in cleveland,
ohio and he said I some sort of autoimmune
disease but not myasthenia gravis, as it
runs in my family and that is what is
study was looking at. My mother,
grandmother, aunt and cousin all had mg,
my brother and dad also had raynauds and
migraines (like me).
So, she is weaning me off steroids as I
had terrible mood swings, swelling, and
unable to sleep. She is starting me on
imuran on thursday.
If I don't have lupus why am I being
treated for all these disorders and she is
backing away from her original diagnosis.
I am just really confused - is this an
insurance reason? Reimbursement for docs
issue?
Somehow having a name for what is
attacking my body.
do I write the myasthenia gravis research
doctor I saw in cleveland and see what he
thinks?
any ideas on what is going on? All I
know is I am in pain, following all the
doctor's orders, exercising (pilates)
taking my meds and trying to sleep at
night but that is come-and-go. I was
working and had to immediately stop
working and driving a car once I came out
of the hospital from the pleuritis and
pericarditis. Is driving limited due to
medications?
well, enough, you can tell I am new to
this disease, overwhelmed by the cost and
confused by the doctors. Thanks for
listening,
confused rn
Meant to Say Now She Says Lupus-like Posted: 04-20-04 10:25am
After all that writing I realized in the
first paragraph I made a mistake, the
rhue. Is back to calling it lups-like
instead of lupus and gives us less
information each visit. Thanks
confused rn
Meant to Say Now She Says Lupus-like Posted: 04-20-04 10:37am
After all that writing I realized in the
first paragraph I made a mistake, the
rhue. Is back to calling it lups-like
instead of lupus and gives us less
information each visit. Thanks
confused rn
That would be my first step, esp after
knowing what the criteria are and also
that you have some sort of verification on
the disease/diagnosis although it was a
casual verification (from your brother you
said?)
also, like ladybrannon states all the
time, are you keeping a diary of all your
ails, aches, pains and general
feelings/thoughts? It's great to bring
with you to any doctor as we all know that
once we have a pain or whatever and then
we actually go see the doctor the pain is
usually gone and we're less clear of
thought on exactly how we were feeling
when it happened.
Hope this helps.
|
Horselvr
New User, Becoming EHEALTHy
Joined: 08 Jun 2004 Posts: 11 Location: California
the Eleven Criteria For Diagnosing Sle Posted: 06-08-04 23:02pm
Dear penny and bolman,
contact your congressman. I had two
years of denial and after writing a letter
to my congressman, I now have coverage.
Good luck!
Horselvr
|
kissthesun2000
New User, Becoming EHEALTHy
Joined: 24 Jun 2004 Posts: 1 Location: n.c.
Rash For a Year Now Lupus Posted: 06-24-04 23:01pm
My doctor called after finally doing a
skin test on a rash I had for a year that
came and went and told me I have lupus. I
work with mr/dd children full time and
have 3 kids of my own. I was talking to a
friend that said it is not a good idea for
me to stay in my line of work being around
sick children all the time with me having
lupus.Does anyone know what to do in a
case like this I go back to the doctor
next week what are some ?'s I should
ask?Thanks jen
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bexar207
New User, Becoming EHEALTHy
Joined: 24 Oct 2004 Posts: 7 Location: michigan
Lupus Help a Brush With Darkness Posted: 10-24-04 01:36am
I picked up this book and it helped me
deal with having lupus. Www.Blindartist.Com
inspirational and informative. It made
me feel that all was not lost.
being around kids all the time, who are
always sick, with an auto-immune disease
is a very bad idea.
Your immune system is not as strong as a
"regular" person and you are more
susceptible to becoming ill.
Definitely tell your doctor the line of
work you are in. He/she will better
explain to you the whole auto-immune
thing.
Clarebear
|
gizzmo
New User, Becoming EHEALTHy
Joined: 16 Feb 2005 Posts: 2 Location: NY
Do I Really Have Lupus? Posted: 02-16-05 22:17pm
During my first few flare ups, the
emergency room didn't know what it was and
neither did i. My family doctor thought
it might be lupus and suggested that I see
a rheumatologist. The first
rheumatologist prescribed prednisone to me
incorrectly causing me to end up at the
emergency room (fool). Anyway, the
second one did many blood test and thought
I had it but wouldn't positively confirm.
Unfortunately, he didn't take my insurance
and I had to find another doctor. The
third and present doctor confirmed that I
have lupus. But, I am pretty sure I don't
have 4 of the 11 symptoms and I have not
had a flare up or any symptoms in about 2
years. I no longer take prednisone or
plaquenil. And my latest blood test are
barely in the positive. They were very
positive for the 3 sets of test before
that, during the first 1 1/2 years.
I have been seeing an internal specialist
in louisiana at a charity hospital for
over 2 years after my original rhu doctor
did nothing for a year and a half and let
this get worse. My new doctor is great
and I think I was really lucky to get
someone like him at a charity hospital.
I don't know what other states offer free
health care but luckily for me louisiana
does. The one thing we do not have is
the right help to get all the meds we need
just to survive this disease. I have
tried almost everything to get help for
prescriptions that will costs me over
$300.00 a month but so far no go. I am
41 and was in the hospital last wednesday
with chest pains, looks like my heart may
be in trouble and also my gallbladder. I
was a legal secretary for 23 years and can
not work. I have been denied disability
once because they said my disease was
managable and the medicine seemed to help.
My reply is come live in my body for one
day and tell me that. I am now diagnosed
with chronic depression and they say it is
because of my disease. Like I don't know
that. But now disability is actualling
interested in listening to me and I may
have a chance of getting it because I am
seeing a psychologist. I don't
understand the goverment and all their
policies they just deny until someone gets
enough and hires a lawyer to fight them
and in the mean time we suffer and worry
ourselves sick. We are not suppose to
stress out or we get worse but when I
can't pay bills I tend to worry. I hope
the lady's daughter can get the help she
needs.
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cscott
New User, Becoming EHEALTHy
Joined: 18 Jul 2005 Posts: 4 Location: Atlanta
Advice On Discoid Lupus Needed Posted: 07-18-05 12:34pm
My sister is 42 years old and was
diagnosed with discoid lupus 15 years ago.
Her symptoms are as follows:-
- lesions on arms, legs, face, under feet
and finger nails and inside ears
- recent incontinence (8 months to 1
year)
- loss of control/numbness in 1 leg below
knee so she uses a walker
- loss of hair including eyebrows
she has been on plaqunil and prednisone
for almost all the time since she's been
diagnosed, yet she doesn't seem to be
getting better. Yet in visit after visit
to her doctor, her internal organs are
fine, blood pressure, eyesight, etc
excellent. Dr says he sees no reason why
she's as debilitated as she is.
We're at our wits end, can anyone recommed
a good dermatologist in the atlanta area,
what about a lupus expert. I don't know
if her symptoms are side effects of the
medication. She stays at home in bed all
day and seems unwilling to fight for her
health. Yet she eats like a horse, maybe
a side effect as well.
I have done quite a bit of research but I
have yet to come across a patient with her
combined symptoms. Please give some
advice that I can pass on to her.
the
past two months I have been treated for
what my doctor told me was lupus-like
syndrome and then lupus. The doctor is
back to calling it lupus. I have had
raynauds, hypothyroidism, malar rash,
photosensitivity, rheumatoid arthritis
symptoms that respond to high doses of
methylprednisone and plaquenil.
I
went to see her friday for a post-hospital
follow up and told me I didn't have enough
criteria to be called lupus. My brother
is a physician in another state and he
can't figure this out either - I am
classic lupus. 
