Newly Diagnosed And Scared Posted: 03-04-07 02:15am
Hello,
I am new to here but I am so glad to have
found this forum. I have posted in the
sticky on SLE criteria with a little
history of myself. I started 6 years ago
breaking out in this rash whenever I would
get out in the sun. It was horrible and
my mom told me that maybe I needed to get
in the tanning bed to get rid of them, she
thought they would dry up cause some of
mine were like blisters. Well that was a
total mistake because it made things
worse. It seems that every year that
passes the ailments I have just keep
getting worse. I have a foot that is cold
all the time and mostly stays white. I
have pain that runs down my right arm and
right leg and this is pain. I have low
grade fevers that come off and on but
mostly I have this achy all over feeling
like I have the flu. My hands, wrists,
elbows, shoulders, hips, knees and ankles
all hurt but not all the time. If I get
cold I hurt more all over. I am tired all
the time, if left alone I think I would
sleep all day. I have chest pains and get
to having a hard time breathing and almost
cant talk cause its like it takes my
breath away. My hands and feet go numb
and tingly feeling mostly when I sit for a
short time. My legs have started to swell
all the time. I have leg cramps in my
right leg almost all the time now, it used
to be just sometimes. I have recently had
some small sores on my tongue that make it
feel numb. My rash I get is usually
caused from the sun so I thought but I
have started having rash breakouts all the
time. I recently went to the
dermotologist who did a biobsy of my rash
and well to the surprise of both of us it
came back saying it was lupus. I have had
more tests then anyone can imagine and my
ANA comes back negative. My dermotologist
has taken more blood this time to see what
it might show. She told me that since
that came back lupus that would explain
all the symptoms that I have been having.
I will have these results back and see the
doctors on the 20th of march and I am
curious if there is anything I should be
asking them when I go or to be honest I am
not sure at all how I am suppose to take
this all in. I want to cry then I laugh
then I think how is my family going to
understand all this and how it will affect
my life which in turn will affect their's.
I know this is a long post and I am sorry
for that but I do not know where to turn
or where to go. I am scared and maybe
that is because of the unknown. I dont
want to burden my husband, 4 kids and the
rest of my family with my worries and
concerns.
I do have one question though is it
possible to have a rash come back with
lupus and have your ANA be negative and
still have lupus. Do I need to see more
doctors. Right now all I have is my
dermotologist and my internist. Thank you
to whoever reads this and I promise not to
post this long again.
Deyene61
|
goldengirl-3
New User, Becoming EHEALTHy
Joined: 11 Mar 2007 Posts: 2 Location: phillipsburg,n.j.
Re: Newly Diagnosed And Scared Posted: 03-11-07 17:30pm
deyene61
wrote:
Hello,
I am new to here but I am so glad to have
found this forum. I have posted in the
sticky on SLE criteria with a little
history of myself. I started 6 years ago
breaking out in this rash whenever I would
get out in the sun. It was horrible and
my mom told me that maybe I needed to get
in the tanning bed to get rid of them, she
thought they would dry up cause some of
mine were like blisters. Well that was a
total mistake because it made things
worse. It seems that every year that
passes the ailments I have just keep
getting worse. I have a foot that is cold
all the time and mostly stays white. I
have pain that runs down my right arm and
right leg and this is pain. I have low
grade fevers that come off and on but
mostly I have this achy all over feeling
like I have the flu. My hands, wrists,
elbows, shoulders, hips, knees and ankles
all hurt but not all the time. If I get
cold I hurt more all over. I am tired all
the time, if left alone I think I would
sleep all day. I have chest pains and get
to having a hard time breathing and almost
cant talk cause its like it takes my
breath away. My hands and feet go numb
and tingly feeling mostly when I sit for a
short time. My legs have started to swell
all the time. I have leg cramps in my
right leg almost all the time now, it used
to be just sometimes. I have recently had
some small sores on my tongue that make it
feel numb. My rash I get is usually
caused from the sun so I thought but I
have started having rash breakouts all the
time. I recently went to the
dermotologist who did a biobsy of my rash
and well to the surprise of both of us it
came back saying it was lupus. I have had
more tests then anyone can imagine and my
ANA comes back negative. My dermotologist
has taken more blood this time to see what
it might show. She told me that since
that came back lupus that would explain
all the symptoms that I have been having.
I will have these results back and see the
doctors on the 20th of march and I am
curious if there is anything I should be
asking them when I go or to be honest I am
not sure at all how I am suppose to take
this all in. I want to cry then I laugh
then I think how is my family going to
understand all this and how it will affect
my life which in turn will affect their's.
I know this is a long post and I am sorry
for that but I do not know where to turn
or where to go. I am scared and maybe
that is because of the unknown. I dont
want to burden my husband, 4 kids and the
rest of my family with my worries and
concerns.
I do have one question though is it
possible to have a rash come back with
lupus and have your ANA be negative and
still have lupus. Do I need to see more
doctors. Right now all I have is my
dermotologist and my internist. Thank you
to whoever reads this and I promise not to
post this long again.
Deyene61
Hi, I am goldengirl-3 also new to the
site. looking for info to take to my
doctors to show that I am someone who may
have lupus and not been diagnoised. Since
1-10-02 when an inhalation accident of
hydrochloric sulfuric acid erased 45% of
my lung capacity I have been having a
monthly body change. I had epstein bare
virus in Feb. 02 and did not even know it
I was so miserable from the accident.
since then I have been having many
problems. Right now I am waiting for my
ana bloodwork which is pending. I
understand 4% of patients can have lupus
and still have a neg. ana. I am actively
looking for signs I may have had lupus in
02. I have alot of the symptoms you are
referring to. expecially the fact that
when I talk to someone within 10 minutes I
have a problem continuing without
shortness of breath and coughing. I have
been diagnosed with so many illnesses, too
many to go into here. but definetly feel
the lupus has shown its self to the point
of acknowledgement after 5 years. Is
there a difference between connective
tissue disease and lupus? thanks for
taking the time with my post.
|
Tammycd
New User, Becoming EHEALTHy
Joined: 05 Jun 2007 Posts: 4
Posted: 06-05-07 17:55pm
I know this is a little late but....... I
was diagnosed (after many years of we
don't know) at 19. We are all bullet proof
then right? I will say that once I
understood what was going on I was not as
scared. I was more afraid once I read
about it. All I saw was you can expect at
least 10 years of fairly normal life. I
kept thinking "then what?" I am ok with it
now at 40 since it is 21 years past 10.
Honestly if it was not for my
Rheumetologist I would have been a basket
case. (He is my best friend and never
makes me feel stupid w/ the questions I
ask) I realize I am one of the lucky ones
but understand as much as you can and when
the bad stuff happens just climb that hill
and and do what you gotta do. I just keep
thinking it can't always be this way and
usually it gets better.
