I am new to this forum and have been
reading and reading and reading! Many of
you have answered some of my questions. I
have just recently been diagnosed with
lupus but I am sure I have had it for many
years. I am seeing a rhuem but I need to
know what questions to ask him. I think I
get tongue tied when I get to his office,
not sure what to ask about this disease.
Please give me some guidelines. Thank
you!
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 11-06-03 01:14am
Welcome tally!
We would love to help you comprise a list.
To help us out, can you tell us the main
focus of your lupus...Rashes, joints,
kidneys, cns, etc.? The answer to this
question will help you further define your
questions and get the answers you
need/want.
A few basics:
1) before the visit (and all other times
too keep a detailed
diary. Always highlight new symptoms or a
change in frequency.
2) ask what tests have been run? Ask for
all the lab results and medical records.
Anyone else? It is late and my mind is
pretty blank! Lol!
Hugs and welcome, tally,
ladybrannon
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Tally
New User, Becoming EHEALTHy
Joined: 05 Nov 2003 Posts: 3 Location: Florida
Lupus Posted: 11-06-03 16:27pm
To answer your questions so you can help
me with my questions; I have experienced
rashes, malar and discoid;
photosensitivity; arthritis (diagnosed for
a long time); extra protein in urine
(don't know the range, just had this test
done) and have tested twice positive ana.
Gee, that's about it! Have not seen
these results, doctor told me. What
should be my questions for my next visit?
I am on plaqenil now. Thanks.
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 11-07-03 17:11pm
Okay here is a start at the questions to
take to the rheumy:
1) can I have a topical steroid creme for
my rashes?
2) what was the protein levels in my
urine? Were my creatine and bun levels
normal, or not?
3) what are my ana levels? Sed rate? And
c reactive protein levels?
4) please give me a copy of all my test
results...
5) with the protein in the urine, do I
need a nephrologist?
6) did you test for anti-dna? Anti-sm?
Anti-ro? If so, what were the results?
7) is your arthritis typical lupus
arthritis (non-degenerative) or
degenerative? Since you have been
diagnosed with it for a while. Another
question about the arthritis...Was your ra
test positive?
get a copy of all
your medical records including past
doctors! Take these to your current
doctor!
Be sure to hand him the diary at the
*beginning* of the visit. Ask him about
*any* new tests and why he is running
them!
I hope this helps! Hugs,
ladybrannon
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Tally
New User, Becoming EHEALTHy
Joined: 05 Nov 2003 Posts: 3 Location: Florida
Lupus Posted: 11-07-03 18:19pm
Thank you so much for the list of
questions I need to ask. I am learning
alot from reading your forum and feeling
less alone in all this. Thanks again and
I will continue to check in and ask
questions if I need to!
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Carey
New User, Becoming EHEALTHy
Joined: 10 Nov 2003 Posts: 2 Location: Naperville
Lupus Posted: 11-10-03 08:31am
I would like to say hello and I joind this
forum to also heal myself. My donna died
and I still hurt she was an angel and I
have nerver seen a stronger women. I hope
that on my web site you can see how pretty
she was and I hope that you would visit
some of the links that can answere your
question's.
Carey
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bethb
New User, Becoming EHEALTHy
Joined: 10 Nov 2003 Posts: 1
Lupus Posted: 11-11-03 15:41pm
Hi, my name is beth, its my first time
here, I was diagnose with sle almost three
years ago, I was 16 at that time. I was
in remmission for 2 years and have
experienced 2 major flares this year so
far. Is there any diet I could follow to
prevent this from happening again.
Everytime I flare up I get worse. Anybody
out there who could help?
Hope to hear soon???
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 11-13-03 22:56pm
Hi beth b! Welcome!
Couple of things about food...
1) do you eat alfalfa sprouts? If so,
stop.
2) do you eat items from the nightshade
family? Bell peppers, tomatoes, etc?
Those can cause problems.
3) do you drink wine? Bad stuff, has
sulfites.
Otherwise, low protein...Lots of fruits
and vegetables!
keep a detailed
diary. Always highlight new symptoms or a
change in frequency.
get a copy of all
your medical records including past
doctors! Take these to your current
doctor!
