Joined: 09 Oct 2003 Posts: 3 Location: Pennsylvania
New to Forum - Looking For Advice Posted: 10-09-03 20:06pm
Hi,
this is the first time I have posted here.
I am 44 years old and the mother of 2
children. I have only recently learned
about lupus and some of it's symptoms. I
suffer from photosensitivity, raynauds
syndrome, days of extreme fatigue and a
red rash across my cheeks and nose. I
have had 3 cbc test which showed anemia.
About 3 years ago I started with other
symptoms. After an unexplained tia the
doctors discovered I had some unexplained
heart damage and mitral valve prolaspe
with regurgitation. I also started having
unexplained seizures. Occassionally I
have severe joint pain, but I don't think
I run a fever. I have numbness and
tingling in my arms and legs. Other than
the raynauds syndrome and the
photosensitivity (i break out in a rash
and then the area turns dark), my
symptoms are intermittent. I never went
to see a doctor, except my ob/gyn, until
after the tia. Now it seems like I have a
doctor in every field. Not one of my many
doctors has ever mentioned the possibility
of lupus and I have never been tested for
it. I was hoping that someone here on the
forum would be able to tell me if this
sounds like lupus. After reading about
lupus I am wondering if I should ask my gp
to test me. Does anyone think my symptoms
could be indicative of lupus? If I were
to ask for a blood test, should I wait
until my symptoms are really bad? Would
the blood test be accurate if I were not
having a bad day/week/month? I would
appreciate any information or advice you
could share.
Thank-you,
donna
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 10-09-03 21:55pm
Welcome! It is nice to meet you! I am
ladybrannon.
I read briefly through your story...And a
couple things come to mind:
1) it cannot hurt to be tested for lupus.
However, lupus is diagnosed by a
combination of blood tests and symptoms;
there is *not* a lupus test, per se.
2) could it be lupus? Sure. Could it be
something else? Sure.
3) tias- yes, they do occur in lupus
patients. Have you had an mri? If not, I
would.
4) you listed having a lot of docs...Do
you have a rheumatologist?
5) keep a diary. Be *very* detailed.
Take it to your doctors.
6) find out what tests they *have* done
and obtain the results. This will help
the doctors as well to have *all* your
tests in one place.
7) don't stress! It will only make it
worse, lupus or no.
8] waiting...No! Will the tests be more
*reactive* if you are sick, yes; but not
worth waiting to find them that way. If
you are diagnosed with lupus, you will
find that the doctors will re-run those
tests ad naseum (but for your benefit and
you will also find that the test results
*can* change).
Blood tests?
Ana
sed rate
c reactive protein
c3 and c4
anti-dna
anti-ro
anti-sm
see if any of these have been tested...
We are all here to help in anyway we
can...Ask away if you have any more
concerns. We will help if we *can.*
hugs,
ladybrannon
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DonnaMc
New User, Becoming EHEALTHy
Joined: 09 Oct 2003 Posts: 3 Location: Pennsylvania
Thank-you Posted: 10-10-03 11:23am
Thank-you ladybrannon for taking the time
to respond to my post. I don't have a
rheumatologist. I was looking through the
the copies of some of my blood work and it
does not look like any of the tests you
suggested have been done. I have an
endocrinologist that checks my tsh, t4 and
glucose about every 3 months. They have
always been normal. I have had an mri.
Supposedly that helped rule out ms. I
live in a small town and I am not sure we
even have a rheumatologist. Perhaps my gp
can order the blood work. Thank-you again
for your help.
Peace to you,
donna
