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can this be lupus?
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| grivna 2005-04-08, 10:25 pm |
| I have been suffering from a strange disease for several months now.
Doctors can't figure out what's going on.
It all started after a major stress, followed by a bad flu, back in
October. The symptoms I have are such:
1. No PERIOD (stopped in October. Never had any problems before
that---a clockwork cycle for 10 years)
2. Fatigue and feeling ill
3. Rash on the face, mostly around mouth-chin area, although now it
appears on the cheeks too. The rash comes, then goes and then comes
again 3-4 weeks later. First it's red then it gets kinda light, dry
and flaky.
4. Headache with noise in the ears
5. Periodic attacks of fainting that's accompanied by numbness in arms
and chest area
6. Lower-stomach, back, muscle and joint pains.
All blood tests are normal except slightly elevated bilirubin. Liver
ultrasound didn't show any liver disease. TSH and prolactin are
normal. I had CT scans of the head and abdomen and they were normal. A
visit to a gynecologist and ultrasound revealed multiple cysts on both
ovaries (due to non-ovulation). The doc suggested that I go on birth
control to even out my hormones. I took ONE pill and it made me so
sick that I ended up in ER the same night. Obviously I didn't continue
taking them. I seem to have pretty bad reactions to a lot of
medications now (didn't use to), like even dental anesthesia makes me
very sick.
Is it possible that I have Lupus? I haven't had any fever. Joint ache,
although present and pretty strong, is not my main symptom (the main
being absence of period, headache and episodes of fainting).
I am only 24 years old and was in good health before this started in
October. Now I feel so bad I can barely function and I look kind of
unhealthy, too, but the doctors can figure out what's going on.
Thank in advance for any thoughts/comments!
| |
|
| grivna wrote:
> I have been suffering from a strange disease for several months now.
> Doctors can't figure out what's going on.
> It all started after a major stress, followed by a bad flu, back in
> October. The symptoms I have are such:
>
> 1. No PERIOD (stopped in October. Never had any problems before
> that---a clockwork cycle for 10 years)
> 2. Fatigue and feeling ill
> 3. Rash on the face, mostly around mouth-chin area, although now it
> appears on the cheeks too. The rash comes, then goes and then comes
> again 3-4 weeks later. First it's red then it gets kinda light, dry
> and flaky.
> 4. Headache with noise in the ears
> 5. Periodic attacks of fainting that's accompanied by numbness in arms
> and chest area
> 6. Lower-stomach, back, muscle and joint pains.
>
> All blood tests are normal except slightly elevated bilirubin. Liver
> ultrasound didn't show any liver disease. TSH and prolactin are
> normal. I had CT scans of the head and abdomen and they were normal. A
> visit to a gynecologist and ultrasound revealed multiple cysts on both
> ovaries (due to non-ovulation). The doc suggested that I go on birth
> control to even out my hormones. I took ONE pill and it made me so
> sick that I ended up in ER the same night. Obviously I didn't continue
> taking them. I seem to have pretty bad reactions to a lot of
> medications now (didn't use to), like even dental anesthesia makes me
> very sick.
>
> Is it possible that I have Lupus? I haven't had any fever. Joint ache,
> although present and pretty strong, is not my main symptom (the main
> being absence of period, headache and episodes of fainting).
>
> I am only 24 years old and was in good health before this started in
> October. Now I feel so bad I can barely function and I look kind of
> unhealthy, too, but the doctors can figure out what's going on.
Hello diana and welcome.
We can't diagnose. Some of what you posted sounds similar to Sharon and
after a frustrating time seeing various experts she got diagnosed with (if
I recall correctly), UCTD undiferentiated connective tissue disease and
was put on a medication that made her feel better, but I haven't seen her
for ages on newsgroups, so I don't how she's doing now or if her diagnosis
has changed.
If the rashes (or other symptoms) occur after sun exposures, diary them.
In fact, start a diary of your signs and symptoms.
You'll have to see a rheumatologist and get screened, I guess.
There's a 1,000 faces to Lupus and each can present differently, so
there's no way we can know.
Before you get diagnosed with anything though, know that health and work
/disability and travel insurances can charge more because of pre-existing
conditions.
Here's some reading http://www.ghg.net/schwerpt/ASLFAQ/index.htm
There's also a book The Lupus Book by (I forget) which might discuss how
Lupus presents in younger persons.
Why did you think Lupus? Does autoimmune run in your family? If so, note
that for your consult.
I wish you well. Stay with us while you sort things out and let us know
how you are doing.
J
| |
| grivna 2005-04-08, 10:25 pm |
| J <herein@invalid.anon> wrote in message news:<4256EE0A.2B4704BA@execulink.com>...
> grivna wrote:
>
>
> Hello diana and welcome.
> We can't diagnose. Some of what you posted sounds similar to Sharon and
> after a frustrating time seeing various experts she got diagnosed with (if
> I recall correctly), UCTD undiferentiated connective tissue disease and
> was put on a medication that made her feel better, but I haven't seen her
> for ages on newsgroups, so I don't how she's doing now or if her diagnosis
> has changed.
> If the rashes (or other symptoms) occur after sun exposures, diary them.
> In fact, start a diary of your signs and symptoms.
> You'll have to see a rheumatologist and get screened, I guess.
> There's a 1,000 faces to Lupus and each can present differently, so
> there's no way we can know.
> Before you get diagnosed with anything though, know that health and work
> /disability and travel insurances can charge more because of pre-existing
> conditions.
>
> Here's some reading http://www.ghg.net/schwerpt/ASLFAQ/index.htm
> There's also a book The Lupus Book by (I forget) which might discuss how
> Lupus presents in younger persons.
> Why did you think Lupus? Does autoimmune run in your family? If so, note
> that for your consult.
>
> I wish you well. Stay with us while you sort things out and let us know
> how you are doing.
> J
J,
Thanks a lot for your response and the link, I'll check it out.
As far as I know my rash is NOT related to sun exposure. It appears
spontaneously every 3-4 weeks or so. Usually the rash stays for a week
or so, then disappears completely, then returns again. And it's not a
super-strong rash, relatively mild. Probably not visible from a big
distance.
A few questions about the Lupus rash:
Is it ALWAYS sun-related?
Is it always really strong or can it be mild?
How long does it stay for?
I'm going to see a doctor next week, until then I'm doing some
research. I've been sick for so long, really sick, but the blood test
is normal, so are the other tests I've had, yet I'm feeling worse and
worse and my period is gone...
Some days I feel better than others, though, and I can't figure out
what the triggers are.
Thanks again!
| |
| pellmellwillynilly@hotmail.com 2005-04-11, 6:14 pm |
| grivna wrote:
<snip>
I have systemic lupus and almost never have fever. When I do, it's
usually with some illness that anyone else would get fever with, like
bronchitis.
[vbcol=seagreen]
> A few questions about the Lupus rash:
> Is it ALWAYS sun-related?
> Is it always really strong or can it be mild?
> How long does it stay for?
My rashes don't follow the "rules" any more than my (usually
non-)fevers. Since I'm rarely in the sun now that I know I have lupus,
my rashes don't usually connect to sun exposure. When I first was
diagnosed with lupus, though, I'd spent 15-20 minutes twice a day
standing out in all weather five days a week in my job. Even then,
though, it wasn't raised or particularly strong. It just looked like
I'd gotten a little windburned. The shape also wasn't like a butterfly
but more like a good pink in the central area of a monkey's face, where
the primate would have lighter hair. That rash stayed until I'd been on
Plaquenil for some months.
Now my rashes are usually connected to stress. They're most likely to
come on after a long day in my office with fluorescent lights overhead.
The right cheek is especially "barometric." If I go to the restroom
late in the day and see a red (not pink) stripe down the right cheek, I
know I need to go home NOW.
I do occasionally get a spectacular butterfly rash, but it doesn't stay
past a night of rest, nor does it get raised (knock on wood). I also
have a generally ruddier complexion than I used to. Nobody would notice
it except someone who knew me extremely well, but it has changed what
colors I can wear as a rule. I'm caucasian. With a sallow, almost
yellow complexion, I could never wear turquoise, because it yellowed me
horribly. With the ruddy lupus complexion, I can carry off turquoise,
which is nice. I like that color!
| |
|
| "grivna" <diana_uretski@sbcglobal.net> wrote in message
news:fa43133b.0504081845.69009632@posting.google.com...
> J <herein@invalid.anon> wrote in message
> J,
> A few questions about the Lupus rash:
> Is it ALWAYS sun-related?
Nope. Sometimes it's related to alchohol consumption, sometimes it's
related to over-exertion, and sometimes it just comes with a flare and hangs
around for weeks on end.
> Is it always really strong or can it be mild?
it varies a lot. Some people only get small patches under the eyes. Others
get the full butterfly including between the brows and a little on the
forehead.
> How long does it stay for?
minutes (a "blush" rash - usually from exertion or heat) to months.
That's helpful isn't it? :P
however, the mouth and chin are I think are more in keeping with rosacea. I
am not certain about that and that doesn't rule out autoimmune problems.
> I'm going to see a doctor next week, until then I'm doing some
> research. I've been sick for so long, really sick, but the blood test
> is normal, so are the other tests I've had, yet I'm feeling worse and
> worse and my period is gone...
I assume when you say your blood tests are normal that they've done ANA and
dsDNA tests along with a Sed Rate?
> Some days I feel better than others, though, and I can't figure out
> what the triggers are.
It's important to understand that if this is an autoimmune response - that
it doesn't necessarily happen within moments or even hours of the trigger.
I've been very well for several months and the only time I usually have
problems is during my cycle. Then I get fevers and aches and migraines and
so on. But it only lasts a few days. So hormones can trigger this.
UV exposure can be sunlight - or it can be fluorescent lighting. Halogen
lamps can be a problem too. And UV exposure can cause a quick reaction or
you might not notice the pain and rash until the next day. Some things
might even take a couple of days or more for the full brunt of the assault
to set in. So you could get the exposure on a nice sunny saturday and feel
tired that day, a little achy Sunday, and then sick as a dog on Monday. The
reason being that it depends on your particular immune system response. How
quickly do your white blood cells start putting up a defense? how much do
the immune components circulate, etc.
As J said, we can't diagnose. From your description, it doesn't *present*
as a lupus usually does. However, as others have pointed out - there's a
typical lupus presentation, and then there's a gazillion other ways it can
present. Plus, there are all sorts of autoimmune variants that can present
in a different manner. Scleroderma, rheumatoid arthritis (I assume you've
had an RF test?), polymyositis, Wegener's... too many to list here but
suffice it to say that if you haven't had the basic autoimmune tests done,
they need to be done and don't give up looking for the problem based simply
on ruling out Lupus. Certainly the major triggers you described (illness and
stress) can start an autoimmune process rolling.
Is it possible you were exposed to disease carrying ticks? (Lyme Disease) I
don't know much about this condition other than it sometimes mimics
autoimmune disease.
Please keep us updated.
KCat
For Pen Talk, Images, Trading and Reviews: The Fountain Pen Network
http://pagesperso.laposte.net/fpnet
For Lupus Support and Info
http://www.ghg.net/schwerpt/ASLFAQ/
| |
|
| grivna wrote:
> I have been suffering from a strange disease for several months now.
> Doctors can't figure out what's going on.
> It all started after a major stress, followed by a bad flu, back in
> October. The symptoms I have are such:
>
> 1. No PERIOD (stopped in October. Never had any problems before
> that---a clockwork cycle for 10 years)
> 2. Fatigue and feeling ill
> 3. Rash on the face, mostly around mouth-chin area, although now it
> appears on the cheeks too. The rash comes, then goes and then comes
> again 3-4 weeks later. First it's red then it gets kinda light, dry
> and flaky.
> 4. Headache with noise in the ears
> 5. Periodic attacks of fainting that's accompanied by numbness in arms
> and chest area
> 6. Lower-stomach, back, muscle and joint pains.
>
> All blood tests are normal except slightly elevated bilirubin. Liver
> ultrasound didn't show any liver disease. TSH and prolactin are
> normal. I had CT scans of the head and abdomen and they were normal. A
> visit to a gynecologist and ultrasound revealed multiple cysts on both
> ovaries (due to non-ovulation). The doc suggested that I go on birth
> control to even out my hormones. I took ONE pill and it made me so
> sick that I ended up in ER the same night. Obviously I didn't continue
> taking them. I seem to have pretty bad reactions to a lot of
> medications now (didn't use to), like even dental anesthesia makes me
> very sick.
>
> Is it possible that I have Lupus? I haven't had any fever. Joint ache,
> although present and pretty strong, is not my main symptom (the main
> being absence of period, headache and episodes of fainting).
>
> I am only 24 years old and was in good health before this started in
> October. Now I feel so bad I can barely function and I look kind of
> unhealthy, too, but the doctors can figure out what's going on.
>
> Thank in advance for any thoughts/comments!
Hello again,
I read your and everyone's reply, then put my thinking cap on and ran some
searches and mulled it over.
I think you should hold off seeing a rheumatologist until you talk to your
primary care physician about what follows...
Your rash seems cyclical in nature - which can perhaps happen with Lupus,
but can perhaps also occur in other diseases where the menses stopped.
I'm taking your word that the cysts are caused by non-ovulution (and not
the reverse), because I don't know about cysts Your lower back and
stomach pain could be caused by the cysts.
http://www.4woman.gov/faq/ovarian_cysts.htm.
I'm concerned that the fainting, numbness in arms and chest area, might be
heart related.
So I looked up liver and rash and this is one of the webpages that came
up.
http://www.netdoctor.co.uk/diseases/facts/hepatitis.htm
When I clicked on hemochromatosis, this seems to fit. Apparently it can
also causes stomach pain.
http://www.netdoctor.co.uk/diseases...chromatosis.htm
My thinking is that perhaps you had a bout of hepatitis (which can mimic
the flu) and concurrently hemochromatosis kicked in due to your cysts and
the non-ovulation. I was tested for that 6 years ago., at my request.
These are the blood tests. Apparently they're fairly inexpensive and
doctors don't always think to check.
If hemochromatosis is suspected, blood tests may help make the diagnosis.
These include:
* Elevated serum iron
* Elevated TIBC (total iron binding capacity)
* Elevated serum ferritin
* Elevated percentage of transferrin saturation
The solution is simple: taking bloodwork on a regular basis, until you
start to feel better or restart ovulating.
If it's chronic, some people get the genetic tests in case they should
tell their relatives to get checked too, but that can wait.
There's also allergies that could explain the facial rash
<http://www.healthcentral.com/drdean...type=DeanTopics>
People with Lupus also sometimes have allergies, but so too the general
public.
That website mentions seeing a dermatologist. You could rule things out by
keeping everything, including hands, away from your face and maybe trying
Dove or an unscented /non allergenc soap.
If none of the above panned out/worked, then perhaps you could see a
derrmatologist. I think a dermatologist can biopsy a rash and rule some
things in (or out), including maybe Lupus.
If none of these pan out, I promise I'll try to not suggest anything else.
I don't want you getting into a whirlwind of specialists based on what I
think (you might have), because it could be never-ending.
Let us know how you make out.
J - not a doctor
| |
| tigtig24 2005-04-11, 6:14 pm |
| hi grievna i know what type of rash you are refuring too i have the
same rash i believe. its just around the sides of your mouth and crese
of your nose and on the sides of your chin. it stays around the laugh
line areas. i just discribed my rash to ya. Ehrlichia, a tick
disease on the side of lyme disease might be a option its just good
luck finding a doctor to actually test you for lyme. I tested positive
for chronic lyme disease in michigan got treated and then we moved to
california now i have entered into a totally diffrent ball game. they
are testing me for lupus because they believe besides lyme i have
something else going on. i have had tests for MS, HIV, had cat scans,
mri's, x rays, blood work constantly, and my rumitiod factor tested
positive with some number i just cant think of it. that is my down
fall is short memory loss. but there are alot of immune disorders
that play with your factors and show normal blood work with basic
CBC's. and also dont show up on the tests i mentioned above. im not a
exspert at all on this stuff but i have been fighting for results since
1998 and i know what your feeling and alot of us do... dont give up be
strong and fight for answers even though you get tired and want to give
up but just keep digging there is a end somewere you just got to fight
for results.
| |
| grivna 2005-04-11, 6:14 pm |
| Guys,
Thanks a lot for your responses!
I find that real people and their experience are oftentimes much more
helpful in diagnosing than all those doctors with their theoretical
knowledge.
Now, I haven't (yet) had any auto-immune tests like ANA and others
that are usually done to diagnose lupus. My main complaint when I
first went to see a doctor (back in February) was amenorrhea (absent
period) and abdominal pains so I was sent to a gastroenterologist and
a gynecologist and wasted a lot of time on useless Cat Scans of upper
abdomen, head and so on. They all turned out normal. I didn't have
back/joint pains back then. I've just started having them now, good 5
months into my disease. Until recently my main complaint was the
amenorrhea and rashes.
My rashes are definitely not sun-related because I started having them
in November when it was unusually freezing cold and rainy here in San
Francisco. No sun whatsoever. I remember how everyone was telling me
that my rashes were probably caused by the cold weather.
The rash I have seems to be aggravated by taking showers. Or washing
my face, especially if I use a cleanser. Putting a cream or
moisturiser on it makes it appear twice as bright.
I was also tested for Celiac disease and I don't have that.
**By the way, a question: If I tested negative for Celiac does it
mean that I don't have any autoimmune disease at all or no? Celiac is
sort of autoimmune too, and I have no idea whether there's a separate
test for every specific auto-immune condition or a generalized test
that shows whether you have any auto-immune condition at all?
**And another question: is amenorrhea a typical symptom in Lupus? I
don't really see it listed as a symptom (unless it's caused by
medication) and then gives me hope that I don't have lupus and my rash
and general condition is hormonal... But then, 6 months is too long if
it's just a simple hormonal imbalance induced by stress/weight
loss/flu. Would have fixed itself by now, wouldn't it.
Thanks again for your help, guys!
| |
| grivna 2005-04-11, 6:14 pm |
| J,
This info about the excess iron ()haemochromatosis) sounds very
interesting. I guess It's possible that I have that, and not lupus,
however I had an ultrasound of my liver done in December and it was OK
(they checked for gall stones based on my slightly elevated
bilirubin). So was the abdominal Cat scan and the liver function blood
test (all normal except bilirubin). Well, I don't know.
I guess I should ask my doc about all this when I see her next week,
but then I don't know if I can ask about lupus and hemochromatosis at
the same time. Doctors get irritated when you start suggesting
different unrelated diagnoses.. Gosh, If only they were more effective
in diagnosing I certainly wouldn't have to look for answers on the
Internet and usenet... But It's been SO LONG that I just can't deal
with this anymore. All my vital reserves are running out.
> I'm concerned that the fainting, numbness in arms and chest area, might be
> heart related.
My cardiogram was normal... Does it rule out heart disease or not
necessarily?
Sorry if my questions sound dumb or naive, but, prior to this I had 23
years of pretty healthy living and I sure took it for granted,
thinking it was going to last for at least another 15 years or so.
Wrong, wrong.
Thanks for the info, J. I have three appointments next week---regular
physican, gynecologist and a neurologist (the last two being new docs
I haven't gone to before). We'll see what they say. I just hope they
will finally find something so that I can start to get treated
somehow.
| |
|
| "grivna" <diana_uretski@sbcglobal.net> wrote in message
news:fa43133b.0504092243.5c5b4f56@posting.google.com...
> Guys,
> Thanks a lot for your responses!
> I find that real people and their experience are oftentimes much more
> helpful in diagnosing than all those doctors with their theoretical
> knowledge.
sadly - true. of course you can get misdirected, too. But IMO, no more so
than the medical community misdirects.
> Now, I haven't (yet) had any auto-immune tests like ANA and others
> that are usually done to diagnose lupus.
Well... I think given the new joint pain and such that these are in order.
> my face, especially if I use a cleanser. Putting a cream or
> moisturiser on it makes it appear twice as bright.
I found that when I stopped wearing make-up or using harsh cleansers this
made huge difference in the severity of the rash I had. But mine wouldn't
be the classic malar rash. Still, i know it was related. And mine was
triggered by UV - as much by my computer monitor as by overhead fluorescent
lights and sunlight.
Most newer monitors do not give off enough UV to be a problem but if you
have an older monitor that can contribute to the problem.
> **By the way, a question: If I tested negative for Celiac does it
> mean that I don't have any autoimmune disease at all or no? Celiac is
> sort of autoimmune too, and I have no idea whether there's a separate
> test for every specific auto-immune condition or a generalized test
> that shows whether you have any auto-immune condition at all?
To my knowledge, the Celiac test is for a specific antibody. But that is
based on discussion with other patients several years ago and I have not
made any attempt to update my knowledge.
> **And another question: is amenorrhea a typical symptom in Lupus? I
> don't really see it listed as a symptom (unless it's caused by
> medication)
Dr. Wallace says it is observed in 15 to 25 pecent of women with SLE and
*can* be related to chemotherapy. But he also says it can be related to
disease activity. If you're symptoms of whatever this is are ramping up...
then I wouldn't rule out the underlying condition causing the amenorrhea.
> and then gives me hope that I don't have lupus and my rash
> and general condition is hormonal... But then, 6 months is too long if
> it's just a simple hormonal imbalance induced by stress/weight
> loss/flu. Would have fixed itself by now, wouldn't it.
eh... maybe, maybe not. if the stress hasn't really abated then it could
take longer. And some things may trigger long-term hormone imbalances. I
think it was a 1.5 years for my sister to get back to a cycle after she came
off of DepoProvera. What I would consider a huge hormone imbalance
basically. I can't recall if you mentioned having your thyroid checked. It
isn't true that all people with hypothyroidism gain weight. If your thyroid
is off, then your periods could be affected.
have you gained the weight back that you lost (sorry if you've already
mentioned this)? As young as you are, weight level is especially important
for consistent periods.
| |
| grivna 2005-04-13, 4:44 pm |
| Well, I just went to my physician. I asked her about lupus (as a
possiblity) and turns out she already tested me for that. I didn't
even know. She thought I had celiac so she tested me for that and that
test also included some "collagen" test (I forgot the exact name) that
is normal, which, according to her means that I don't have lupus
either. That collagen test results would be abnormal if I had lupus.
Do you guys know what that collagen test I'm talking about here, and
if yes---do you think my physician is right and I can just relax about
lupus?
| |
| grivna 2005-04-13, 4:44 pm |
| > > Now, I haven't (yet) had any auto-immune tests like ANA and others
>
> Well... I think given the new joint pain and such that these are in order.
Turns out, I already had some "collagen" test about two months ago.
The results were fine. My doc claims that I don't have lupus. However,
my gynecologist ordered the ANA test and I had the blood drawn today
so in a few days I shall know for sure.
I don't really have much joint pain, though. Hardly any at all. I do
have back pains that come and go.
I do hope that my disease is simply stress-related psycho-somatic
thing. Prolonged amenorrhea is scary, of course. But my other symptoms
are weird, as they come and go and replace each other. I used to have
gastro-intestinal problems in January and February and now they are
pretty much gone and I developed back pains instead... I also started
having these strange episodes that seem to be panic attacks.
Does that ever happen in lupus patients---complete replacement of one
symptom with another, totally unrelated one (my stomach ache and
indigestion are gone and back pains are kicking in).
I had the TSH test before (was normal) and just had some other thyroid
test today. They also tested me for some hormones. So I'm waiting for
results. Anything is okay, as long as it's treatable and not as
extreme as lupus. Again, my doctor is sure that I don't have lupus,
based on that collagen test I had before, and I really hope she's
right!
>
>
> I found that when I stopped wearing make-up or using harsh cleansers this
> made huge difference in the severity of the rash I had. But mine wouldn't
> be the classic malar rash. Still, i know it was related. And mine was
> triggered by UV - as much by my computer monitor as by overhead fluorescent
> lights and sunlight.
>
> Most newer monitors do not give off enough UV to be a problem but if you
> have an older monitor that can contribute to the problem.
>
>
> To my knowledge, the Celiac test is for a specific antibody. But that is
> based on discussion with other patients several years ago and I have not
> made any attempt to update my knowledge.
>
>
> Dr. Wallace says it is observed in 15 to 25 pecent of women with SLE and
> *can* be related to chemotherapy. But he also says it can be related to
> disease activity. If you're symptoms of whatever this is are ramping up...
> then I wouldn't rule out the underlying condition causing the amenorrhea.
>
>
> eh... maybe, maybe not. if the stress hasn't really abated then it could
> take longer. And some things may trigger long-term hormone imbalances. I
> think it was a 1.5 years for my sister to get back to a cycle after she came
> off of DepoProvera. What I would consider a huge hormone imbalance
> basically. I can't recall if you mentioned having your thyroid checked. It
> isn't true that all people with hypothyroidism gain weight. If your thyroid
> is off, then your periods could be affected.
>
> have you gained the weight back that you lost (sorry if you've already
> mentioned this)? As young as you are, weight level is especially important
> for consistent periods.
| |
|
| I hope your doctor is right - but if she is, it is correctness based lack of
knowledge.
No single test can rule lupus in or out. If she instead meant she did a
collagen vascular disease *panel* that actually tests ANA, ESR and possibly
other factors, then i might buy her statement as strong evidence against
lupus. But lupus (all autoimmune diseases) are complex and to say that
because one test was okay, you don't have it, is unfortunately, naive at
best. Uneducated at worst.> Do you guys know what that collagen test I'm
talking about here, and
I don't want you to worry more than you already are worrying. But this is
just the truth about diagnosing lupus and other autoimmune conditions. it
is often a long and difficult process.
OTOH, some doctors go the other extreme which is just as dangerous - they
see a positive ANA and decide you have lupus even if there are no other
criteria met to diagnose the disease. I've seen this happen a few times
here on the board over the years. A positive ANA could mean lupus. or it
could mean many other things as well. A negative ANA does not mean no
lupus, but it can mean the disease activity is mild.
Think of it this way - many lupus patients are diagnosed based on history
and positive blood tests. They might start out with an ANA of 1:640
(moderately high). They go on treatment, they go into remission. They go
in and get their tests run and now their ANA is only 1:40. ("negative").
Have they suddenly been cured? No. They're in remission. So you can't use
these sorts of tests the way some doctors use them - to say yay or nay.
There are the American college of Rheumatology Criteria. In the US, you are
supposed to meet 4 of the 11 criteria to be diagnosed. That's why there are
a lot of diagnoses of "undifferentiated connective tissue disease" (UCTD)
and Fibromyalgia. Because a lot of times folks have 3 or even 7 of these
criteria but lack certain criteria that are given more weight than others.
Here is a longer discussion of lupus diagnosis. I recommend reading the
entire page. It's pretty easy to follow and explains more about the various
tests.
http://www.ghg.net/schwerpt/ASLFAQ/diag.htm
yes, lupus tends to be a variable disease not only from one person to
another but from one time frame to another. I had bad hip pain for several
years, now the hip is fine but the pain moved to a different joint. It's
called "wandering joint pain" for just that reason. it's a strange thing
but indicates the systemic nature of SLE.
Like I said though - I don't see you as presenting as a typical Lupus
patient. Which doesn't really say much because it is such a variable
disease. So figuring out what *is* wrong could be a challenge. and your
doc may have to do some trial and error.
I started getting sick in 95. was diagnosed with "aches and pains disease"
in '97. it wasn't until about 99 or so, when I convinced my doc to see if
Plaquenil would ease my symptoms, when she started really admitting that I
have an autoimmune disease. She still won't call it lupus. Now it's UCTD.
But that's her bias against the US medical insurance systems as well as
employment issues.
I want to tell you this is just stress and recovery from the virus. But I
don't feel I can say that any more than I can say you have lupus. If you
have mild autoimmune disease, you may never know for certain and just have
to deal with the symptoms as they present.
Wish it was less complex and vague than that. But it just isn't. 
Still - there are many of us here who have had lupus or a related disease
for many years and are still productive and having fun with life. The
treatments for autoimmune (collagen vascular) disease are improving as is an
understanding of what the patient can do to protect themselves from flares.
--
---
KCat
For Pen Talk, Images, Trading and Reviews: The Fountain Pen Network
http://pagesperso.laposte.net/fpnet
For Lupus Support and Info
http://www.ghg.net/schwerpt/ASLFAQ/
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| grivna 2005-04-14, 8:42 am |
| > Like I said though - I don't see you as presenting as a typical Lupus
> patient.
>
> I started getting sick in 95. was diagnosed with "aches and pains disease"
> in '97. it wasn't until about 99 or so, when I convinced my doc to see if
> Plaquenil would ease my symptoms, when she started really admitting that I
> have an autoimmune disease. She still won't call it lupus.
Wait a minute. What about your blood tests? Did you have positive ANA
or any of the blood abnormalities associated with Lupus? Or none at
all?
As for my diagnosis---I just have to relax and wait until monday, when
the ANA test comes back. But I guess the fact that I DO NOT have any
major joint pains or any inflammation whatsoever, and my blood labs
are all normal---all of that makes it kind of unlikely that I have
autoimmune disease. Based on what I've read about lupus over the past
few days It seems that it's quite unusual for someone to have lupus
without any joint pains. I'm under impression that it's the most
important symptom, am I right?
| |
|
| In article <fa43133b.0504131941.31b1d343@posting.google.com>, grivna
<diana_uretski@sbcglobal.net> wrote
[]
>
>As for my diagnosis---I just have to relax and wait until monday, when
>the ANA test comes back. But I guess the fact that I DO NOT have any
>major joint pains or any inflammation whatsoever, and my blood labs
>are all normal---all of that makes it kind of unlikely that I have
>autoimmune disease. Based on what I've read about lupus over the past
>few days It seems that it's quite unusual for someone to have lupus
>without any joint pains. I'm under impression that it's the most
>important symptom, am I right?
Yes.. BUT another feature is that you don't suffer from all the symptoms
all the time. They come and go.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
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|
"grivna" <diana_uretski@sbcglobal.net> wrote in message
news:fa43133b.0504131941.31b1d343@posting.google.com...
disease"[vbcol=seagreen]
if[vbcol=seagreen]
I[vbcol=seagreen]
>
> Wait a minute. What about your blood tests? Did you have positive ANA
> or any of the blood abnormalities associated with Lupus? Or none at
> all?
I had a pos. ANA - only 1:320. I've had low wbc and rbcs for several years
but they are always just barely below the reference range. However, I had
neutropenia that surprised us a couple of years ago - my neutrophils dropped
drastically but eventually recovered (this was not too long after I started
plaquenil). And then over a year ago my eosinophils jumped up to 19% but
have always been quite high. about 25% is life-threatening so that had her
scared. Again, that seems to have come under some control. Still high but
not scary high. But all these things had to occur over a long period of
time. I've only had my dsDNA checked once and it was normal but it's only
high in about 20-30% of all patients. It was my history of problems that
she has largely taken into account in treating me as a UCTD patient.
> few days It seems that it's quite unusual for someone to have lupus
> without any joint pains. I'm under impression that it's the most
> important symptom, am I right?
hmm... I wouldn't say it's the most important symptom. But perhaps it is
the most common symptom after fatigue. As far as weighting criteria - the
doctors mostly put most weight on the blood tests, then on the outward
symptoms. Joint pain could be anything therefore its given fairly low
weight. UV sensitivity is usually given more weight by the docs I talk to.
But again, it's about putting the big picture together and that can take a
while.
| |
| cloud 2005-04-19, 10:50 am |
| Lyme Disease? Hep C? Have you been tested for either?
Always,
...· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*
> disease"
> if
> I
>
> I had a pos. ANA - only 1:320. I've had low wbc and rbcs for several
> years
> but they are always just barely below the reference range. However, I had
> neutropenia that surprised us a couple of years ago - my neutrophils
> dropped
> drastically but eventually recovered (this was not too long after I
> started
> plaquenil). And then over a year ago my eosinophils jumped up to 19% but
> have always been quite high. about 25% is life-threatening so that had her
> scared. Again, that seems to have come under some control. Still high
> but
> not scary high. But all these things had to occur over a long period of
> time. I've only had my dsDNA checked once and it was normal but it's only
> high in about 20-30% of all patients. It was my history of problems that
> she has largely taken into account in treating me as a UCTD patient.
>
>
> hmm... I wouldn't say it's the most important symptom. But perhaps it is
> the most common symptom after fatigue. As far as weighting criteria - the
> doctors mostly put most weight on the blood tests, then on the outward
> symptoms. Joint pain could be anything therefore its given fairly low
> weight. UV sensitivity is usually given more weight by the docs I talk
> to.
> But again, it's about putting the big picture together and that can take a
> while.
>
>
| |
| grivna 2005-04-27, 8:53 am |
| Well, I got my blood results back. The ANA is only 26. Does it mean
that I can relax about Lupus?
In the meanwhile, some of my symptoms have gotten better (some even
disappeared by themselves), however I've been having this terrible
pressure in the back of my head with noise in the ears and stiff neck,
which I new. I haven't had stiff neck before. And mood swings are
killing me, one minute I can be totally fine and the next minute I'm
in a totally inadequate state of panic/depression.
So I kinda hope that I'm just a psycho and my pathetic health
condition is due to stress and not some mysterious organic illness.
I certainly DO have a nervous/emotional disorder, no question about
it. It's just as this point I can't really tell what is the cause and
what is the effect. Is it my mental state that's causing all these
physical pains and disorders, or is it some organic disease that
causes the mental symptoms. Go figure. I sure am tired of this.
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| Hi g,
I agree with J. The ANA # does not make sense to me either. Do you have any
other test results to report? I am looking for abnormals that are seen in
lupus or some other autoimmune disease.
BJ-Sk. Canada
"grivna" <diana_uretski@sbcglobal.net> wrote in message
news:fa43133b.0504262304.780aecbb@posting.google.com...
> Well, I got my blood results back. The ANA is only 26. Does it mean
> that I can relax about Lupus?
> In the meanwhile, some of my symptoms have gotten better (some even
> disappeared by themselves), however I've been having this terrible
> pressure in the back of my head with noise in the ears and stiff neck,
> which I new. I haven't had stiff neck before. And mood swings are
> killing me, one minute I can be totally fine and the next minute I'm
> in a totally inadequate state of panic/depression.
> So I kinda hope that I'm just a psycho and my pathetic health
> condition is due to stress and not some mysterious organic illness.
> I certainly DO have a nervous/emotional disorder, no question about
> it. It's just as this point I can't really tell what is the cause and
> what is the effect. Is it my mental state that's causing all these
> physical pains and disorders, or is it some organic disease that
> causes the mental symptoms. Go figure. I sure am tired of this.
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