Is This Lupus? / Lupus Symptoms Treatment Posted: 08-18-07 07:56am
Something is wrong and I need help finding
out how to treat my symptoms. It seems
like my doctor treats each symptom and
then something else starts, and the other
one continues.
I will list my symptoms any advise is
appreciated. The doctor keeps telling me
that everything is normal but some of
these things cannot be in my
mind--sometimes I think I am making it all
up. I have been told that my lupus test
(ANA) is negative. The other response from
doctors is “you are overweight—what do
you expect.”
Visable / Diagnosed Symptoms
--Panniculitis-with Erythema Nodosum
confirmed by biopsy---I thought I just had
spontaneous bruising but the dermatologist
I am seeing for the acne took a biopsy of
the bruises.
--Acne—just started with in the last
year—never even had it is a teen and is
getting much worse on my chest and back,
if I spend 5 minutes in the sun—I get
pimples on my face, neck, chest, back,
arms, stomach, and legs.
--Red spots on my chest, and sides of
abdomen (I did not write down what they
are called but the dermatologist said they
are tiny blood vessels that have ruptured
under the surface of the skin—and they
will never go away)
--Ganglion cysts—hands, wrists, elbows,
shoulders, knees, anchles, feet.
--Ulser on my tounge that had to be
removed (biopsy was normal), but when the
skin rashes get worse it reoccurs
--Sheath cysts on tendons (not the same as
ganglions but also painful)
--Carpal tunnel—surgery to fix (with
ganglion cysts)
--De Quervain's tendinitis–surgery to
fix (with ganglion cysts)
--Planar fasciitis—both feet had surgery
to fix
--Pleurisy –Two instances in the last
five years.
--Unexplained blood in the urine that self
resolved.
Non visable symptoms
--Pain in all my joints and I had this
when I was much thinner.
--Fever for no reason that will last for
weeks/months at a time.
--Daily weight fluctuations (up to 12 lbs
in two days), when periods of higher
weight come on I am hardly able to move my
joints without PAIN, even my toes hurt to
move.
--Periods of being tired, so tired I have
to dose up with a lot of caffeine to make
it thru the day.
--I am always HOT, like I am burning up
from the inside, I perspire when others
are cold. I joke that my thermostat is
broken. This is also at night when my
sheets get so wet I have to change pajamas
during the night.
--Periods of hair thinning, which grows
back in then starts over again.
I have no idea where to start figuring out
what is wrong—but when I started doing
research the only common thread is lupus.
I need help figuring out what is wrong so
I can get it treated.
Any suggestions are appreciated.
|
lonestarguy
Active User, Really EHEALTHy
Joined: 21 Jun 2007 Posts: 593 Location: , Big D
Thanks: 12
Thanked:1
Hey Jani Posted: 08-19-07 14:48pm
I answered the other post first and
noticed you had already been there. You
can read about my mom's lupus diagnosis.
It's a terrible disease and it looks like
you have had a brutal time of it already.
Whenever someone your age (I'm guessing 36
from your profile) says that the sun
triggers some of your symptoms, I see a
red flag because my mom had a similar
experience.
I can't believe your lupus test was
negative either because you have a variety
of autoimmune flareups. The only symptom I
can relate to that you have is the
thermostat problem. I was wounded in war
and when the surgeons were stitching me
up, they saw that the bullet had severed
my parasympathetic nerves. So, since then,
I have numbness on one side of my ribs and
I only sweat on one side of my body. It
sounds okay but my body is like yours, it
can't cool or heat itself properly. So I
understand part of your life.
And, NO, the symptoms are not in your
mind. You clearly have suffered more pain
and confusion than any one person should
have to in a lifetime. It pains me that
I'm not a doctor so I could diagnose your
symptoms and at least have an idea of what
is causing this torture.
Good luck
|
janitazim
New User, Becoming EHEALTHy
Joined: 18 Aug 2007 Posts: 3 Location: Tucson, AZ
Thank You Rick Posted: 08-19-07 17:19pm
My doctor has blown me off, but my
dermotoligist is actually the one
investigating this. She has requested the
biopsoy results from the oral surgen, and
said 'normal' is not descriptive enough to
understand the biopsy results. After the
panniculitus (bruise) test results, she
sent me for another blood test, which I
expect to be negative. However since the
blood test two weeks ago I went in the sun
for a few minutes and have been having
more symptoms, again. I had not linked
the sun exposure to the rashes on covered
skin. I am medium complexion and do not
usally burn. Actually I had not linked
any of the symptoms to one cause--just
though I am whimpy and weak--so I try not
to acknowledge that anything is wrong
until I end up in the emergency room.
Janita
|
lonestarguy
Active User, Really EHEALTHy
Joined: 21 Jun 2007 Posts: 593 Location: , Big D
Thanks: 12
Thanked:1
Hey Janita Posted: 08-19-07 19:06pm
Janita....First of all, nice name. You're
the first Janita I have met. Also, glad to
hear at least someone is helping you.
Screw your other doctor. I've been through
a succession of doctors with chronic back
pain, and it only takes one empathetic one
to rock your world!!
Gosh, I couldn't believe none of these
docs (or quacks as I call them) had not
told you about the sunlight triggering
episodes of lupus. My mother and cousin
both had sunlight reactions. My cousin has
moved to Idaho and my mom never went
outside without a long-sleeve shirt,
gloves and a hat.
Also, my mom was part American Indian and
had a very dark complexion and she stayed
out in the sun constantly when we were
growing up in Texas. She had no idea that
the sun might have been what triggered her
illness until about ten years after her
symptons.
You're surely welcome for any assistance I
can give. You deserve a lot more help. Let
me know how things work out. You can pm me
if you don't to tie up the forum.
Good luck, Rick
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PsychNurse007
New User, Becoming EHEALTHy
Joined: 15 Oct 2007 Posts: 14
Posted: 10-15-07 05:19am
Many people with lupus have false
negatives on their ANA. It's not a very
reliable test and therefore are many
people with lupus who are negative. a
positive ANA is only one of 11 symptoms
that are commonly used to diagnose lupus,
usually if you have 4 or more of the other
symptoms you are considered to have lupus.
Also, you can teter between positive and
negative. Also, many people who have
lupus also test a false-positive for
syphilis, this is so common it is
considered one of the 11 diagnosing
factors. As for the weight gain, I would
definately get that checked out as that
can be very serious, possibly suggesting
some kidney involvement and can quickly
lead to heart and lung problems. The
weight you are gaining is caused by fluid
retention and will cause edema which will
most noticibly cause swollen ankles and is
some of the cause of your joint pain
because fluid is also building up around
your joints, and also, more seriously
around your heart and lungs. If you feel
that your doc is not listening to you ask
for a referral to a different one. You
will find a doc that is the right fit for
you but it may take some time.
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Marysday
New User, Becoming EHEALTHy
Joined: 21 Oct 2008 Posts: 1
Exercise Posted: 10-21-08 13:56pm
When I try to exercise, the pain in my
legs is really bad, what can I do? I have
been diagnosed with pannaculitus and have
raised bruised marks on my calves.
I have no fat left and only muscle, they
really hurt, and I have been given
percocet because anti-inflammatories dont'
work at all. I have tried them and
also changing my diet. I am not over
weight and I do have terrible hot flashed
but I tried to get off of the narcotics
one time and I didn't have any problem at
all
except my legs hurt terrible. Do you have
any suggestions for me at all?
