About a year ago, I kept going in to the
Dr. For numerous things. I was always
sick, achey, extreamly tired and weak,
major headaches (all day and all week) and
I would get random pains all over my body.
Most of the pain would be in my knees,
hands, feet...Well all over my body
actually, in my joints mostly. So finally
the Dr. Told me he wanted to test me for
something called lupus...I didn't at the
time know what it was. After he explained
it to me, I was like, oh god, this sounds
like something I might actually have. It
made total sense to me. They took a blood
sample and it came back with a sed rate of
79. He told me that was really high even
for someone who was just sick with a cold
or flu. So he sent me to a specialist,
well I couldn't get in for a few weeks and
after seeing him for a couple of visits,
he took another blood test, it was normal
at that point. Now they haven't
completely ruled out lupus yet because
they said something about "flare ups".
They it was possible that I was going
through a flare up at the time and then
the second test, I was not, so it didn't
show.
I still get these symptoms, constant
headaches, achey joints, weak, fatigue,
nausea, skin rashes on my chest and my
face. These are all signs, but how do I
know if it is a flare up? How do I know
it is not? I know the Dr. Would be able
to tell. But I don't want to go in every
time I don't feel well and be like, "take
my blood, test me!" I don't want to sound
like I am a hypocondriact who is trying to
find something wrong. But I would like to
know what is going on with my body. It
has been years since I have said to
myself, "i feel good today". There is
always something wrong, whether it be a
headache, or my knees hurt, or my hips
hurt or I have a rash or whatever.
Does anyone have any advice? Does this
even sound like lupus to anyone? I heard
that lupus signs can come and go in the
beginning, is this true? I guess those
would be considered "flare-ups"...But are
those the only time they can really
diagnose me with lupus?
I am just looking for a little help, if
someone can offer that...It would be
greatly appreciated.
Thank you all in advance!
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Gattuch23 Posted: 10-02-03 14:02pm
Hi there and welcome!
You are experiencing what a lot of us
have...The unknown.
could it be lupus? Sure, but there are
tons of other things it could be too. To
be honest, it does make sense to wait
until you have all of these symptoms again
and then do another round of bloodwork.
However, there *are* some thngs you can do
to help the diagnosis along.
1) keep a meticulous diary. Did you run a
fever today? What joints hurt? Did I
have a headache? Where were the rashes?
What did they look like? Etc. You get
the idea.
2) get a copy of all your past blood tests
for two reasons:
a) it will help the doctor you are
currently seeing
b) it will tell you what tests they *have*
done and what they *have not* done. Some
tests to look for are...
Ana test (this will be in a ratio form.
Slightly positive would be 1:160) anti-dna
antibodies, c reactive protein, c3 and c4
(these are compliment levels), have you
been tested for anemia? Have you been
tested for anti-sm antibody test,
anti-rnp antibody test, anti-ro antibody
test...To name a few.
Also, they will want to look for anemia
(low rbc count) or leukopenia (low wbc
count).
I am also going to stick post the things
to look for when trying to diagnose lupus.
I hope this helps! Hugs,
ladybrannon
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Gattuch23
New User, Becoming EHEALTHy
Joined: 25 Sep 2003 Posts: 20 Location: Oregon
Anemia Posted: 10-02-03 14:20pm
I forgot to mention that I have not been
diagnosed with anemia but I am pretty sure
I do have it. Every time I go to donate
blood, they always tell me my red blood
cell count is really low. I take iron
pills, eat tons of spinich, red meat and
other iron rich foods especially a month
before I try to donate. But nothing ever
works, it is still really low! So I have
to donate my blood...And at the rate I am
going. I don't think I will ever get too
either.
And I will take your advice and start
keeping an in depth diary.
Thank you!
And please people, keep the advice and
comments coming!
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Hmmm... Posted: 10-02-03 14:40pm
This is slightly off topic here, but
people with systemic lupus are not allowed
to donate blood...At least here in the
usa. Fyi...
Cheerio,
ladybrannon
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
to Gattuch23 Posted: 10-02-03 14:43pm
Whether or not you are anemic is a simple
blood test that the doctor should have
tested you for (and probably has). Again,
this is why you want a copy of your lab
results...And maybe even your medical
records. It is amazing what you find in
your charts...Sometimes.
Hugs,
ladybrannon
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Gattuch23
New User, Becoming EHEALTHy
Joined: 25 Sep 2003 Posts: 20 Location: Oregon
Blood Donation Posted: 10-02-03 14:50pm
I haven't been diagnosed with lupus
yet...They are still testing me. After
that negative test I got, I put it out of
my mind, thinking I didn't have it. Since
I have o- blood, I thought I should try to
donate, try to help. The lupus thing
never crossed my mind again, until most
recently when I started feeling under the
weather again. Plus, maybe I am little
nieve, but I thought if there was
something wrong with your blood that they
wouldn't use it on anyone else. Or they
could detect it before you gave it, which
they obviously have, considering they
refuse to take mine everytime I try. I
have given up on giving blood until I can
find out what is wrong with me. I have
just started believing that maybe there is
a reason I keep getting denied, and should
find out what that reason is.
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Fyi Posted: 10-02-03 15:23pm
Things such as lupus and mctd are not able
to be found in simple blood tests...Thus,
there is no way they could test for it
before you give blood.
As for the anemia, I highly suggest you
confirm that they have at least ran the
tests. Your doctor needs and will want to
see those numbers.
If you feel that you have not been getting
the answers you need, it might be wise to
look for a new doctor. Just a
thought...
Have you seen a rheumatologist? I can't
recall from your first post...
hugs,
ladybrannon
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Gattuch23
New User, Becoming EHEALTHy
Joined: 25 Sep 2003 Posts: 20 Location: Oregon
Yes Posted: 10-02-03 15:36pm
Yes I did see a rheumatologist and I
didn't like him. He is the specialist who
ran the second test, said it was negative
and blew me off. I also have degenerative
disc disease and he had asked me if there
was anything else I had. So I said, well
I do have ddd and he goes, "oh, that is
not big deal, that doesn't cause pain".
So I said, "oh, well then my other Dr.
Must be mistaken because I am certainly in
a lot of pain because of it". He was
totally rude and unsympathetic. My pcp
(gp) is my new Dr. I haven't really
brought any of this to his attention, he
is good and likes to get down to what is
causing my problems. I do need to get a
hold of all my past charts and have them
sent to him and sit down with to figure
out what is going on. But I don't want to
annoying him, seeing that I am a new
patient of his. But that is what Dr. Are
paid for, to help us out. It's just a
matter of finding one who is more
concerned with helping you than taking
your money.
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 10-02-03 16:09pm
Here! Here!
It sounds like the new doctor is very
promising. Once you explain everything to
him, I bet he could recommend a better
rheumatologist.
I think all of us can say that it took a
while for us to find doctors that we feel
comfortable with. I have had a few in my
past, that while good, could never fathom
that a 19 year old could be *really* sick.
I wish you the best! Hugs,
ladybrannon
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Jenn
Experienced User , Rather EHEALTHy
Joined: 09 Sep 2003 Posts: 78 Location: Canada
Doctors Posted: 10-03-03 07:23am
Hi,
i don't know about everyone else but I see
my gp at least once a week. We have
actually become friends. He doesn't treat
me like i'm crazy. There is nothing wrong
with going to your doctor and requesting a
test. I find you have to tell doc's what
to do most of the time anyway. :d
remember it's your body you are dealing
with. You can have whatever tests you
want.
