Is This Lupus--and Why Do I Need An Oncologist/hematologist? Posted: 09-26-03 18:44pm
Hi everyone. Maybe someone out there can
help me because the doctors have not been
able to for 11 years now. Originally
because of joint pain, my gp thought it
might be lupus, but all tests were
negative, and through the years I was
thought to have multiple sclerosis,
fibromyalgia, and rheumatoid arthritis.
I have had many painful and unusual
symptoms, including a stroke-like seizure
resulting in numbness and weakness of my
left side. The most that had showed up
in my bloodwork was an extremely elevated
sed rate about 5-6 years ago. I recently
saw a new rheumatologist who was pretty
well convinced from my exam that I had
ankylosing spondylitis until my bloodwork
came back. I understand from the nurse
(the doctor never called me) that a
coagulant test came back positive for
lupus, but that "i do not yet meet all the
criteria". It looks like they might be
finally zeroing in on lupus as a
diagnosis.
What concerns me, though, is that she is
referring me to a doctor (who I found out
was an oncologist) because of a low
white-blood count. Are hematologists and
oncologists the same or related, and is
this low white-blood count possibly
related to lupus, or could it be something
else. Thanks for reading this, and
please know that you are all in my
prayers.
Rose
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
a Few Things... Posted: 09-26-03 19:02pm
A low white blood count can be associated
with lupus. An oncologist is, as I
recall, a cancer doctor. A hemtalogist is
the "blood" doctor.
The reason why the nurse said that you
have the lupus anti-coagulant but have not
met the criteria for lupus is just that.
Someone can have the lupus anti-coagulant
but not have lupus.
To meet the criteria, you need to have
four of the eleven symptoms listed at the
college of rheumatology's website.
As always, there are a lot of things that
could be going on with you. Even after
seeing a rheumatologist, hardly anyone
gets an immediate diagnosis. I think I
waited six months or longer for my lupus
diagnosis.
There are things that you can do to help
your doctor get a diagnosis
1) keep a diary everyday of anything that
happens...Did you have a headache that
day? Nausea? Joint pain? If so, where
and for how long? Did you have a fever?
You get the idea.
2) if you saw other doctors before the
current one, go and get all of your
medical records form these other doctors.
3) get all of your lab results, past and
present. Organize them and turn them over
to the lead doctor.
4) if you are really worried about lupus,
you can ask if the following tests have
been done...Ana (the results are given in
a ratio formula), sed rate (which I think
you said was high in the past), c reactive
protein, double stranded dna, c3 & c4
levels, etc. You can go to www.Lupus.Org and can
retrieve a more thorough list of blood
tests.
Remember you know your body best...So let
the doctor know everything that has
bothered or concerned you!
I hope this helps a little.
Hugs,
ladybrannon
|
rose
New User, Becoming EHEALTHy
Joined: 24 Sep 2003 Posts: 7 Location: Louisiana
Posted: 09-28-03 14:20pm
Thank you, ladybrannon,for your very
informative response. I guess I always
assumed that someday a doctor would put
all the pieces to the puzzle together and
say, "aha--this is what's been causing all
your problems." but through the years it
has become apparent that I am my own best
doctor. Your advice about keeping a
journal of my symptoms is an excellent
one, especially considering I tend to get
amnesia when I visit the doctor and
afterwards i'll think of all the things I
should have mentioned. One more
question, though. Some people tell me
this low white blood count probably only
means I am anemic and may need iron
supplements. I thought anemia was when
your red blood count was low. Can you or
someone shed some light on this? Thanks
so much.
Rose
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Rose... Posted: 09-28-03 16:35pm
Anemia...Is a low rbc count. It is also
found in a lot of lupus patients. Sorry
that I did not make that clear.
The following was copied from the lfa's
symptom list: the first part is the
symptom and the percentage is the number
of lupus patients who have experienced
it...
Achy joints (arthralgia)
95%
frequent fevers of more than 100 degrees
f.
90%
arthritis (swollen joints)
90%
prolonged or extreme fatigue
81%
skin rashes
74%
anemia
71%
kidney involvement
50%
pain in the chest on deep breathing
(pleurisy)
45%
butterfly-shaped rash across the cheek and
nose
42%
sun or light sensitivity
(photosensitivity)
30%
hair loss
27%
abnormal blood clotting problems
20%
raynaud's phenomenon (fingers turning
white and/or blue in the cold)
17%
seizures
15%
mouth or nose ulcers
12%
hugs,
ladybrannon
|
sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
We Must Be Twins! Posted: 09-28-03 18:16pm
No kidding! Your story is a lot like
mine. I had the stroke and numbness on my
left side. I'm still trying to get
answers. I still have lots of problems on
my left side. Weekness and cramp-like
pain that won't go away! Sometimes it's
worse than other times and lately it's
been bad!!! i'm going to print
out your story to show my doctor .I'm not
happy this is happening to you,but it
makes me feel better that I am not
crazy!!
It's been a few years and no doctor has
been able to help me understand why this
happened to me.......Thanks for sharing
your story.....Sharon
|
rose
New User, Becoming EHEALTHy
Joined: 24 Sep 2003 Posts: 7 Location: Louisiana
Posted: 09-29-03 20:35pm
Hi sharon-
I agree, it's good to hear that i'm
not alone with these unusual symptoms. I
hope this helps you with your doctor.
Thanks for your response--you're in my
prayers.
Rose
|
rose
New User, Becoming EHEALTHy
Joined: 24 Sep 2003 Posts: 7 Location: Louisiana
Posted: 09-29-03 20:38pm
Ladybrannon (or anyone) --do you know
what, if anything is done to correct a low
white blood count? I see the
hematologist in two days, and I was just
wondering what I might expect. Thanks.
Rose
|
sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Low Blood Count Posted: 09-29-03 22:38pm
Hi rose, I can only tell you that in the
past when I was told I had a low white
blood count, I was in the hospital and
they would not let me out til it came up!
Or, when it would show up in my reg.
Labs. My doctor would either put me in
the hospital or would monitor me real
close. I almost missed the birth of my
grandson because my doctor wouldn't let me
travel until it was normal.When I told him
nothing was going to keep me from being
there, he informed me that I would not
only be putting my life in danger, but
also the baby's. That woke me up!
So take it seriously and do what the
doctor says.........Sharon
|
metrauma
New User, Becoming EHEALTHy
Joined: 02 Oct 2003 Posts: 2 Location: SC
Oncologist Or Hematologist Posted: 10-02-03 02:57am
Hi,
i will try to help. An oncologist deals
with cancer. A hematologist deals with
diseases of the blood such as anemia, low
or high white blood count, low or high
platelet count. Often times a doctor
will be a specialist in both oncology and
hematology. I hope this helps. I also
have lupus and was diagnosed in 1999.
God bless, metrauma
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Rose... Posted: 10-02-03 14:51pm
Are you on methotrexate of cytoxan, per
chance?
Ladybrannon
|
rose
New User, Becoming EHEALTHy
Joined: 24 Sep 2003 Posts: 7 Location: Louisiana
Posted: 10-02-03 16:47pm
Ladybrannon--i am not on any medications,
other than a low-dose estrogen because of
a hysterectomy. I am scheduled for a
liver/spleen scan in the morning. The
hematologist tried to explain why he needs
this--something about needing to see how
my blood is circulating there, but I don't
really understand. Any ideas? Thank
you. Rose
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 10-02-03 17:21pm
It sounds to me like the doctor is being
very thorough and looking at all options.
I wish you luck tomorrow! Let us know how
it goes; we will be thinking about you.
Hugs,
ladybrannon
|
sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Hysterectamy Posted: 10-02-03 22:24pm
Rose, I had mine in jan '98 ,i had a
really rough time. They thought I had
cancer. They even had a cancer doctor do
the surgery. I had alot of people in the
waiting room praying for me and they found
none of the cancer that showed up on the
test. It's a long story ,but they said
that if I had waited another week ,i would
be dead. The lord wasn't done with me
yet!!..........Sharon
|
Jenn
Experienced User , Rather EHEALTHy
Joined: 09 Sep 2003 Posts: 78 Location: Canada
Rose Posted: 10-03-03 07:33am
Hi rose,
i have been told many times by my doctors
that I am not allowed to use estrogen. It
greatly increases the risk of blood clots
in lupus patients. My obgyn went all the
way to washington ( I live in
newfoundland) to research for me. When he
came back he said that he would not
prescribe the pill because of the
estrogen. He said I would have to go to
someone else. If you are having problems
with circulation you should really look at
stopping the estrogen. I also asked my gp
and he gave me the same answer. Right now
I take depoprovera for b/c.
Good luck,
jenn
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 10-03-03 07:42am
I second what jenn says, you want to make
sure there are no circulation problems. I
have been taken completely off birth
control pills because of it.
It should be really easy to find out if
they have already done the tests. A
simple call to your doctor should confirm.
Ask them if they have done the
antiphospholipid tests...
Hugs,
ladybrannon
|
rose
New User, Becoming EHEALTHy
Joined: 24 Sep 2003 Posts: 7 Location: Louisiana
Posted: 10-03-03 13:31pm
Thanks everyone--the liver/spleen scan
went fine. I get the results next week.
My recent bloodwork did show a blood
clotting problem (i think--the nurse told
me this very quickly) because the
rheumatologist said I should start taking
an aspirin a day. So--i guess the
estrogen is not a good thing for me, but
will I be okay without it after a total
hysterectomy? I won't change any
medications until I see the doc next week,
though. God bless you all. Rose
What concerns me, though, is that she is
referring me to a doctor (who I found out
was an oncologist) because of a low
white-blood count. Are hematologists and
oncologists the same or related, and is
this low white-blood count possibly
related to lupus, or could it be something
else. Thanks for reading this, and
please know that you are all in my
prayers.
i'm going to print
out your story to show my doctor .I'm not
happy this is happening to you,but it
makes me feel better that I am not
crazy!!
