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Medical Forum / Diseases and Disorders / Lupus / September 2003

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Need Advice..........scared father of daugther who I think could have lupus

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NBFAA - 26 Sep 2003 08:46 GMT
Hi,

Sorry to barge into your support group .  I am pretty shook up at present as I
am very concerned about my daughter's health.  About a six weeks ago my
daughter went to the emergency room due to chest pain.  Dx with pluerisy and
sent on her way with a prescription for Ibuprofen (sp).  She continues to have
some discomfort but no pain six weeks later.  She did go to a follow up visit
which the doctors said that she had no other symptoms of gall bladder attack.
They had her jump up and down and etc. She recently had breast surgery to
enhance her breast and I am wondering if this could be related to her pluerisy.
That sugery took place two months before she had this pain.   In addition,  she
has had a deprovera shot (sp).  A birth control shot about three months ago.  I
looked up pluerisy and saw possible causes listed,  lupus being one of them.  

They did a cat scan at the er room and found nothing. So I am guessing no mass
or cancer.   She is starting a new job here in a few weeks where medical
benefits start same day she starts.  I need your advice on how i should proceed
with my daughter.  I am not a educated man but I love her deeply. Do I take her
to the doctor or wait until insurance kicks in .  Will a pre existing condition
make it harder for her if I take her in prior to insurance?  Or Am I crazy in
waiting?  I live five hundred miles away from her and will drive there in a
flash if you all think I should take her to the doctor prior to her getting
insurance. She insists that she is okay, etc.  However,  she loves me and
wouldn't want to worry me.  So I think she could be lying to me .   I need to
know what you all think about this.  I know you are not doctors and etc.  I
just need some guidance on how to approach this issue with her and I don't want
to alarm her needlessly.  SHe is 22 years old and
has allways had knee problems most of her life.  I need some objective advice
so that I don't under react or over react here.  I need to do what is right for
her. Any suggestion or feedback would be appreciated.

nbfaa@aol.com

Neil
J - 26 Sep 2003 13:14 GMT
Partial reply which you might not like.

> Sorry to barge into your support group .  I am pretty shook up at present as I
> am very concerned about my daughter's health.  About a six weeks ago my
> daughter went to the emergency room due to chest pain.  Dx with pluerisy

causes of pleurisy http://www.merck.com/pubs/mmanual_home2/sb/sb052_1.htm

> and sent on her way with a prescription for Ibuprofen (sp).  She continues to
> have
> some discomfort but no pain six weeks later.  She did go to a follow up visit
> which the doctors said that she had no other symptoms of gall bladder attack.

Neither did I, but I had 2 huge stones which started "acting up" very shortly after
I started birth control meds.
Large stones can sometimes be picked up on x-ray.
Note in causes of pleurisy "pancreatitis".  Gall stones can cause pancreatitis.
The symptoms can be similar (mimic each other), the organs are close to each other.

Although I would think that an inflamed pancreas would have been picked up by a CT
if they imaged that area of her body and not just her lungs.

> They had her jump up and down and etc.

This must be some "inside doctor" joke for the "jiggle factor". I have never in my
born days (and that's a long time) and on newsgroups heard of this !

> She recently had breast surgery to
> enhance her breast

One?

Which makes little logical sense to me (to add weight) to a person who "has had
knee problems most of her life".
You'll see arthritis on the list (above), but she seems rather young for that,
unless she's had sports or dance-related wear and tear/injuries and/or wears the
wrong shoes.

What else makes you think autoimmune or Lupus? Family history? or other signs
/symptoms (if so which)?
CT scans don't rule out all types of cancers.

Talk to us, maybe we can help figure it out.
J
Marg Watson - 26 Sep 2003 14:56 GMT
Hi Neil!

I don't know how much I can offer, but there will be some advice coming
along for you.

Lupus is very difficult to diagnose at times.  I was misdiagnosed at
first, then was told it's an autoimmune disorder or a "Lupus-like"
disorder. I could later be diagnosed with Lupus or never be.  It's up
for grabs.  

A lot of people go through this & it takes years to be given a
diagnosis.  It seems to me that it's too soon to panic, but never to
soon for you to learn everything you can about pleurisy, Lupus,
pancreaitis etc..  You can be prepared when & if more symptoms begin or
continue.  

Another thing you need to consider is her willingness & youth.  You know
her much better than I, but I remember being 22.  Ahhh!  Young &
carefree--at least until I was 23. : )  You want her to share her
symptoms with you & I fear if you panic & run out to get her & drive her
to the nearest doctor & they can't find anything wrong right now, then
she may be less likely to trust you with *new* information in the
future.

I know you're stuck between a rock & a hard place & you want her to know
you care.  It's just such a hard call & like I said, other's will be
along to speak to you & they are down right brilliant.  Be patient as
it's the weekend & it may take 'til Monday or so for those people to
appear.

In the meantime, listen to 'J ' & let us know if other symptoms have
occured in her life.  Does she have fevers often, any rashes, etc..  Is
there a family history of thyroid problems, asthma, diabetes, Lupus,
rheumatoid arthritis etc.?

Be patient & try not to worry, k?

Kind Regards,
Maggie
J - 27 Sep 2003 08:54 GMT
> <snip>
>   She is starting a new job here in a few weeks where medical
> benefits start same day she starts.  I need your advice on how i should proceed
> with my daughter.  I am not a educated man but I love her deeply. Do I take her
> to the doctor or wait until insurance kicks in .  Will a pre existing condition
> make it harder for her if I take her in prior to insurance?

Yes.
A pre-existing condition could make it harder for her to get a job or insurance.
A pre-existing condition could make it harder (or more expensive) for her to get
health and disability and travel insurance.
And that includes breast implants (if that's what you mean by breast enhancement),
based on my reading that newsgroup.
While I'm on the subject, I think they cost approx $2000? It is said they're
guaranteed "for lifetime".
As best I can tell, 10 years is about the average, and resurgeries cost about
$10,000 (US), so if she's a Lupus patient (or any chronic illness for that matter),
how the devil is she going to cope with that (maybe 3 or 4 resurgeries in her
lifetime) not to mention complications like infections or poor healing (for those
who are on Prednisone).

Some do better than 10 years (20 - 25 years), some have complications early, even
soon after the surgery.
Some have complications and don't recognize them as such.
Some have no complications but just change them due to aging or size issues.

It would appear that some who get involved in (non health-related ) cosmetic
surgery early, often go on to wanting other
enhancements to their bodies, over the years.

> Or Am I crazy in
> waiting?  I live five hundred miles away from her and will drive there in a
[quoted text clipped - 7 lines]
> so that I don't under react or over react here.  I need to do what is right for
> her. Any suggestion or feedback would be appreciated.

On the one hand, one thinks a 22 yo is an adult and must make their way themselves.

Parents worry and rightly so.  There's a limit to what parents can actually "do"
for adults.
We were fairly healthy but our parents watched out for us well into the twenties
and longer.

I wonder how she could afford the surgery if she was not working...
Is there more happening (where she is), that a father might want to be aware of and
warn her about.

Back to the knees, of course she could have JVA juvenile arthritis, which may later
require Prednisone. It too is/can be a systemic illness - and very serious.

Back to Lupus, certainly pleurisy can be one of the symptoms and if she still has
symptoms six weeks later, one must wonder because in healthy individuals, I think
pleurisy clears in a matter of weeks.
http://www.mayoclinic.com/invoke.cfm?id=DS00244
Pleurisy occurs as a complication of a wide variety of underlying conditions.
Relieving pleurisy involves treating the underlying condition, if it's known, and
taking pain relievers.<snip>
http://www.mydr.com.au/default.asp?article=3639

If she does have Lupus, she would need to know what to avoid (meds, foods, sun
etc).
She in theory could be treated, without an official diagnosis, if she found the
right rheumatologist.
If not, she could crash badly, and end up in hospital very serious.

Those are my thoughts for now, maybe more later.
J
NBFAA - 27 Sep 2003 14:29 GMT
Thanks for all the input.  I will continue to revisit this group for possible
information.  
As per her financial position?  She just quit and is starting a new job.  Her
implants are already in and I was wandering if the surgery itself could of
caused the pluerisy, etc.  

>>   She is starting a new job here in a few weeks where medical
>> benefits start same day she starts.  I need your advice on how i should
[quoted text clipped - 91 lines]
>Those are my thoughts for now, maybe more later.
>J
J - 27 Sep 2003 17:15 GMT
> Thanks for all the input.  I will continue to revisit this group for possible
> information.
> As per her financial position?  She just quit and is starting a new job.  Her
> implants are already in and I was wandering if the surgery itself could of
> caused the pluerisy, etc.

1) just read that payment plans are offered
2) pleurisy, I don't think so, but I don't have them, and don't know for sure.

The chest is in front of the lungs/pleura. (pleura/pleurisy)
The implants apparently can be inserted in front of or behind the chest muscles.
So, in theory, if she got an infection during this surgery, maybe it's possible to
get the bacterial form of pleurisy???
http://www.merck.com/pubs/mmanual_home2/sec04/ch052/ch052b.htm
But the surgeon would have to be pretty bad (and there are some out there) to have
mucked this up that badly.

A few points here:
I as far as I know, don't have Lupus, my brother might, is partly why I'm here
(besides friends and loving this group).  I did have (dry) pleurisy about 5? years
ago. And man is that painful ! It's hard to breathe in, because of the pain.
I'd never heard of, so I went to ER and they did tons of tests, they shrugged and
said "it must be pleurisy" because they said the tests don't usually show pleurisy
unless there's lots of fluid showing up in the lungs,  So that would be the (wet)
form of plerisy, which I think the lupies here get.
Anyway, they told me to take tylenol.  I was better in a few weeks, then it came
back several times over the summer.
In Lupus patients, I believe their pleurisy may/could be more chronic, last
longer? (maybe someone else here could speak to that)

Next point, before such surgeries, I believe the doctors are supposed to ask the
person if they or families members have an autoimmune disorder.  If "yes", they're
not supposed to do the surgery, I think.
But if the patient doesn't know or say (admit), then the surgery happens.  The
patient signs an "informed consent" form saying that they've been informed of all
the risks and accept the potential risks. So in theory if your daughter has Lupus
and doesn't know, she could end up (wrongly) blaming the implants for the Lupus.

Of course, at this point, she may not have Lupus and just have a simple case of
pleurisy. I don't know.

http://www.fda.gov/cdrh/breastimplants/
This one mentions autoimmune /Lupus
http://www.plasticsurgery.com.au/pdfdocs/breast_implant.pdf

By the way, you didn't mention if autoimmune runs in your family?
J-not an expert at any of this
NBFAA - 28 Sep 2003 07:00 GMT
Auto Immune Disorder in my family?  I don't believe so.  I have never heard of
anybody being affected by a auto immune disorder in the family.  However,  we
do have have anxiety issues in the family.  Our anxiety tends to really stress
us out.  We all have nervous habits and it tends to manifest in a habit of
somekind. Example,  I tend to eat or binge and etc.
J - 28 Sep 2003 12:22 GMT
> Auto Immune Disorder in my family?  I don't believe so.  I have never heard of
> anybody being affected by a auto immune disorder in the family.

Me either, until I found out that my thyroid problem was autoimmune and also found
out that my uncle had Lupus.
Here's a partial list of
<http://groups.google.com/groups?hl=en&lr=&ie=UTF-8&selm=3E54D709.A11BD4FD%40exec
ulink.com
>

and on searching it seems that KC was right, inflammatory Bowel disease, is also
autoimmune.
<http://grants1.nih.gov/grants/guide/rfa-files/RFA-DK-95-005.html>

> However,  we
> do have have anxiety issues in the family.  Our anxiety tends to really stress
> us out.  We all have nervous habits and it tends to manifest in a habit of
> somekind. Example,  I tend to eat or binge and etc.

Well, I don't think this specific newsgroup can help you there, but perhaps
talking to your doctor about those issues.
Perhaps that's what your daughter's pains are about also?
Hopefully you've taken note of everything we can think of that might possibly
account for chest pains, including heart and GERD (reflux) and maybe you could pop
a short note to your daughter with the list and encourage her to work with a
doctor to sort these out.

Do let us know if you dscover she does have Lupus or if other signs and symptoms
seem to suggest it.
They're mentioned at the url, at the bottom of Andy's posts.
Best wishes,
J
BJ - 27 Sep 2003 20:39 GMT
Hi Neil,
Please don't feel as if you barging in on the group. Everyone is most
welcome here. I am not clear on whether it was possible gall bladder or
pleurisy pain that took your daughter to emergency. Perhaps you could
clarify that. Pleurisy can exist on it's own, without an underlying
condition. Maybe her surgery made her more suscepible to it. That is the
only connection I can make. She could go on a low fat diet for now, if gall
bladder is a problem. It would buy some time until her medical benefits fall
into place. I have a daughter too, and I worry about her. However, it might
be best to take her word on how she is feeling. I am sure you would know, if
she were terribly ill. She could have a doctor do a complete blood count at
a later date, if that has not already been done. That would give you an idea
of whether or not to look further. I don't know if I have been at all
helpful. Feel free to ask more questions.
BJ-Sk. Canada
> Hi,
>
[quoted text clipped - 30 lines]
>
> Neil
J - 27 Sep 2003 21:57 GMT
> Sorry to barge into your support group .  I am pretty shook up at present as I
> am very concerned about my daughter's health.  About a six weeks ago my
> daughter went to the emergency room due to chest pain.  Dx with pluerisy and
> sent on her way with a prescription for Ibuprofen (sp).  She continues to have
> some discomfort but no pain six weeks later.  She did go to a follow up visit
> which the doctors said that she had no other symptoms of gall bladder attack.

Oh yes, as BJ mentioned, I lost sight of this also.
Stories I can tell you.
18 months of pain because my then doctor (35 years ago) told me "it can't possibly
be gallbladder stones because you are not vomiting" and "the location of pain is
not typical of gallbladder".  So he refused me tests.
It was only incidental by another doctor who took my word and ran an x-ray and
found 2 large stones and rushed me to surgery.
By the way, earlier I mentioned chest-xray, I don't remember what type of x-ray
actually,
Here they mention abdominal x-ray and other tests. I would think ultrasound maybe
/might see (even small) stones, a GI doc would know.
http://www.nlm.nih.gov/medlineplus/ency/article/001138.htm

At the same time, I was having trouble, my sister in law was also. She had tiny
little stones, albeit just as painful.
Not viewable on x-ray. I do not know what tests they had to do for her to confirm,
but she was taking some type of med to try and "blast" the little ones to
smithereens, so they'd pass through the duct AND continuing to drink and eat
"fatty" foods.

Not eating fatty foods IMO is a temporary solution (if she has stones). It's
dangerous to keep them in once they start acting up. Infections can occur and/or
cause damage to adjacent organs.  But if she's just recently had surgery, I imagine
she needs some healing time.  I had the open type surgery
http://www.nlm.nih.gov/medlineplus/ency/article/002930.htm

A friend of mine's doctor and she also didn't recognize the signs, so for 4 years,
she was hit suddely with chest pains. We thought it was her heart, but it wasn't
until finally it got bad enough that it was infected and she was vomiting.  Then
there was a delay for surgery.  As a result of the delay (I think), she's now left
with residual pains.  I had no problems for 31 years after my surgery, except for
longer recovery with the open surgery. (being careful what I drank or ate).
So there's the gallbladder.
J
PS Gallblader can mimic pancreatitis, but again I would think the CT (she had)
would have picked up on that.
PPS Just to confuse things more, with Lupus, just about any part of the body can
inflame. (maybe/probably the gallbladder also) and mimic stones, but better safe
than sorry.
Rose - 28 Sep 2003 02:03 GMT
Hi Neil

> Hi,
>
> Sorry to barge into your support group .  I am pretty shook up at present as I
> am very concerned about my daughter's health.  About a six weeks ago my
> daughter went to the emergency room due to chest pain.  Dx with pluerisy and
> sent on her way with a prescription for Ibuprofen (sp).  

I've been having chest pains 24/7 going on 9 months
straight. I too went to the hospital back in May thought I
having a heart attack. I didn't have one fortunately but
whatever it was it did a nice job of mimicking one. Fooled
everyone including the doc until the lab results started
coming back.

I still don't know what is causing mine and my doctor still
hasn't diagnosed what is causing it. The anti-inflamatories
have not worked at all and neither has anything else.

For now I just live on a day by day basis. If whatever I'm
doing starts making my chest pain worse I stop immediately
and just take it easy. This gets me through the day and I
don't worry much about it. I just keep track of the type of
pain I get, what activity I was doing, and how long it
lasts. There has been times I do get rather worried but most
of the time I just live with it.

So my advice to you is just be supportive to her. You said
that you live 5 hours away. That is too long for you to be
of any immediate help. The best thing you can help her with
is finding an excellent doctor and hospital. Try to find one
that specializes in the type of disease she has as her
primary care physician or at least as a specialist. Some
doctors can really blow you off or in their sincerity, try
to help but are not competent enough to treat such patients
as your daughter.

Best of luck

Sincerely
Rose
 
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