|
Home > Archive > Lupus Support > January 2005 > My symptoms, what do you think?
You are viewing an archived Text-only version of the thread.
To view this thread in it's original format and/or if you want to reply to
this thread please [click here]
| Author |
My symptoms, what do you think?
|
|
|
| I was hoping to introduce myself and ask for your thoughts on my
symptoms. I am a 33 year old White and Native American woman. At the
end of October I went to get a haircut and the hairdresser discovered a
patch of alopecia. I have since lost another small patch of hair.
Towards the end of November I woke up one morning with severe joint
pain in what seemed like every joint in my body. It lasted for a full
month. At one point it hurt so much to move that I had to have someone
help me put on my coat.
I started to think I might have lupus and started looking for
information (I also saw the doctor and have had various tests run see
last paragraph).
Additional symptoms that I think might indicate lupus are
1. I get a butterfly shaped blush on my cheeks that will last for
various amounts of time from several hours to several days and then
just disappear. This was actually noticed initially by my coworkers and
ob/gyn not me.
2. I have asthma
3. Whenever I have a cold I get mouth sores on the roof of my mouth and
the sides of my tongue. Sometimes I get these when I am not sick, the
first time it happened I was in college and the sores got so bad I
could not eat and my face swelled up. This went on for more than 10
days, then I woke up one day and my mouth didn't hurt and within a day
or two they were all gone. It has never been this bad again.
4. Migraines, I get one or two a month, have always suspected they were
hormone related.
5. One short (4 mos) bout of clinical depression approx 3 years ago.
6. Muscle aches. I regularly have twingy muscle aches in thighs that
are not exercise or strain related.
7. I don't know if it would be considered extreme fatigue, but I am
ALWAYS feeling and complaining of being tired but not necessarily
sleepy.
8. Cysts on my ovaries
9. Occasional night sweats
10.IBS
I saw the doctor after the hair and she said she thought I just had
alopecia but tested me for hypothyroidism (which I did not have). I
went back in to see her during the joint pain episode and she ran a
bunch of tests (including something for ANA) and I am still waiting on
results. I think this sounds very much like I have lupus and am just
coming off a flare-up. What do you think? If my tests come back all
normal, how much should I push for trying to figure out what is wrong
since I am feeling pretty good now?
Thanks.
| |
| herbwormwood 2005-01-07, 7:10 am |
| Hi,
I don't know if you have lupus but it sounds like you should get tested for
it. If you feel ok now without having had any treatment for lupus that is
good. Maybe it was a bad virus or something which has passed.
Lupus is however more of a collection of symptoms and signs so some people
will have some of the symptoms without being labelled as having lupus.
If you have lupus there are some things you can do to help yourself.
This is my personal list what I have been told by doctors here in England
over many years so not everyone will have been told this or even agree with
it.
1. Avoid exessive sunlight. A you have the rash it indicates you may be sun
sensitive.
2. Avoid excess stress and try to rest if you feel weak.
3. Avoid excess salt in your diet and avoid red meat. Eat healthy.
4. Avoid chemicals that could trigger your asthma (this one I personally have
not been told but I know asthma sufferers who have.
Even if you have not got lupus these things should help you.
And even if you have not got lupus you can hang out here!
Let us know how you get on!
On Fri, 7 Jan 2005 01:39:50 +0000, TMB wrote
(in article <1105061990.095264.182130@z14g2000cwz.googlegroups.com> ):
> I was hoping to introduce myself and ask for your thoughts on my
> symptoms. I am a 33 year old White and Native American woman. At the
> end of October I went to get a haircut and the hairdresser discovered a
> patch of alopecia. I have since lost another small patch of hair.
>
> Towards the end of November I woke up one morning with severe joint
> pain in what seemed like every joint in my body. It lasted for a full
> month. At one point it hurt so much to move that I had to have someone
> help me put on my coat.
>
> I started to think I might have lupus and started looking for
> information (I also saw the doctor and have had various tests run see
> last paragraph).
>
> Additional symptoms that I think might indicate lupus are
> 1. I get a butterfly shaped blush on my cheeks that will last for
> various amounts of time from several hours to several days and then
> just disappear. This was actually noticed initially by my coworkers and
> ob/gyn not me.
> 2. I have asthma
> 3. Whenever I have a cold I get mouth sores on the roof of my mouth and
> the sides of my tongue. Sometimes I get these when I am not sick, the
> first time it happened I was in college and the sores got so bad I
> could not eat and my face swelled up. This went on for more than 10
> days, then I woke up one day and my mouth didn't hurt and within a day
> or two they were all gone. It has never been this bad again.
> 4. Migraines, I get one or two a month, have always suspected they were
> hormone related.
> 5. One short (4 mos) bout of clinical depression approx 3 years ago.
> 6. Muscle aches. I regularly have twingy muscle aches in thighs that
> are not exercise or strain related.
> 7. I don't know if it would be considered extreme fatigue, but I am
> ALWAYS feeling and complaining of being tired but not necessarily
> sleepy.
> 8. Cysts on my ovaries
> 9. Occasional night sweats
> 10.IBS
>
> I saw the doctor after the hair and she said she thought I just had
> alopecia but tested me for hypothyroidism (which I did not have). I
> went back in to see her during the joint pain episode and she ran a
> bunch of tests (including something for ANA) and I am still waiting on
> results. I think this sounds very much like I have lupus and am just
> coming off a flare-up. What do you think? If my tests come back all
> normal, how much should I push for trying to figure out what is wrong
> since I am feeling pretty good now?
>
> Thanks.
>
| |
|
| Hi TMB,
I would certainly be suspicious. I think you will have a better idea once
your test results come back. Some of the people here are good at
interpreting them, so feel free to post the numbers if you like. You are
most welcome to talk to us anytime.
BJ-Sk. Canada
"TMB" <trishbailey@gmail.com> wrote in message
news:1105061990.095264.182130@z14g2000cwz.googlegroups.com...
> I was hoping to introduce myself and ask for your thoughts on my
> symptoms. I am a 33 year old White and Native American woman. At the
> end of October I went to get a haircut and the hairdresser discovered a
> patch of alopecia. I have since lost another small patch of hair.
>
> Towards the end of November I woke up one morning with severe joint
> pain in what seemed like every joint in my body. It lasted for a full
> month. At one point it hurt so much to move that I had to have someone
> help me put on my coat.
>
> I started to think I might have lupus and started looking for
> information (I also saw the doctor and have had various tests run see
> last paragraph).
>
> Additional symptoms that I think might indicate lupus are
> 1. I get a butterfly shaped blush on my cheeks that will last for
> various amounts of time from several hours to several days and then
> just disappear. This was actually noticed initially by my coworkers and
> ob/gyn not me.
> 2. I have asthma
> 3. Whenever I have a cold I get mouth sores on the roof of my mouth and
> the sides of my tongue. Sometimes I get these when I am not sick, the
> first time it happened I was in college and the sores got so bad I
> could not eat and my face swelled up. This went on for more than 10
> days, then I woke up one day and my mouth didn't hurt and within a day
> or two they were all gone. It has never been this bad again.
> 4. Migraines, I get one or two a month, have always suspected they were
> hormone related.
> 5. One short (4 mos) bout of clinical depression approx 3 years ago.
> 6. Muscle aches. I regularly have twingy muscle aches in thighs that
> are not exercise or strain related.
> 7. I don't know if it would be considered extreme fatigue, but I am
> ALWAYS feeling and complaining of being tired but not necessarily
> sleepy.
> 8. Cysts on my ovaries
> 9. Occasional night sweats
> 10.IBS
>
> I saw the doctor after the hair and she said she thought I just had
> alopecia but tested me for hypothyroidism (which I did not have). I
> went back in to see her during the joint pain episode and she ran a
> bunch of tests (including something for ANA) and I am still waiting on
> results. I think this sounds very much like I have lupus and am just
> coming off a flare-up. What do you think? If my tests come back all
> normal, how much should I push for trying to figure out what is wrong
> since I am feeling pretty good now?
>
> Thanks.
>
| |
|
| thanks to both of you for replying. I expect test results this week but
plan to ask for a rheumatologist referral regardless of the results.
One of my close friends has Lupus and thinks I should see someone even
if I am feeling mostly ok. So that if it is Lupus and I start feeling
really bad again I have some history with someone.
| |
|
| I think seeing a rheumy is a very good idea. You certainly seem to have a
number of things going on that are rather suspect. I do hope you will let us
know what the doctor finds.
BJ-Sk. Canada
"TMB" <trishbailey@gmail.com> wrote in message
news:1105241408.871083.71510@c13g2000cwb.googlegroups.com...
> thanks to both of you for replying. I expect test results this week but
> plan to ask for a rheumatologist referral regardless of the results.
> One of my close friends has Lupus and thinks I should see someone even
> if I am feeling mostly ok. So that if it is Lupus and I start feeling
> really bad again I have some history with someone.
>
| |
| Michael Roeper 2005-01-09, 7:09 am |
| If the ANA is positive, that's usually an indication of Lupus (the others
here know more about that than I do) I had an initial "moderate positive"
ANA but its been negative ever since then but have Lupus. I think Andy said
last week 5% of Lupus Pts throw negative ANA's. I also have Hughes Syndrome,
you might research that a little and ask your doc about it. It's called many
other things, also called Antiphosphoidlipid Syndrome too. Don't correct me
on the spelling of that, it's probably wrong. The Lupus foundation says if
you have like 4 of a possible 11 symptoms, you probably have lupus. Actually
their test is kind of misleading (in my opinion). It's the American
Association of Reumatoligists or some group like that that have perrected
the test. With the srthritis symptoms, the rash and the sores in your mouth,
it sounds kind of "Lupie" to me.
Andy?
Keep up your research, there's lots of info out there on the internet and
again, I think Andy said this week if your info is older than 10 years, it's
out of date. I hope he reads this and sets you straight about what I've
said. I also have all the CNS cognitive, short-trem emmory stuff and am
lucky I remember my name half the time.
Good luck to you.
Hey Bev....now that Citizen Bush is starting to mess with Social Security
and I lost my state Medicade, I'm thinking about moving to Canada. Run for
the hills! You got any spare bedrooms up there (and how's the chow in your
household?)
Michael
"BJ" <Babs@sk.nojunk.ca> wrote in message
news:10u19qppdtfdr27@corp.supernews.com...
> I think seeing a rheumy is a very good idea. You certainly seem to have a
> number of things going on that are rather suspect. I do hope you will let
us
> know what the doctor finds.
> BJ-Sk. Canada
> "TMB" <trishbailey@gmail.com> wrote in message
> news:1105241408.871083.71510@c13g2000cwb.googlegroups.com...
>
>
| |
|
| In article <JbWdnbyn280GinzcRVn-jw@comcast.com>, Michael Roeper
<roeper@comcast.net> wrote
>If the ANA is positive, that's usually an indication of Lupus (the others
>here know more about that than I do)
I think it's an indication of *something*, but to diagnose lupus other
and more specific tests are needed. I'd see ANA more as a flag to the
medics that more investigation is needed, rather than discharging the
patient with a pat on the back and a cup of tea.
>I had an initial "moderate positive"
>ANA but its been negative ever since then but have Lupus. I think Andy said
>last week 5% of Lupus Pts throw negative ANA's. I also have Hughes Syndrome,
>you might research that a little and ask your doc about it. It's called many
>other things, also called Antiphosphoidlipid Syndrome too. Don't correct me
>on the spelling of that, it's probably wrong.
"Hughes' syndrome (antiphospholipid syndrome)
This is often called sticky blood in that the patients have a
tendency to clots both in the veins and arteries. The thrombosis
may present either dramatically or over a period of time with
clots in major vessels, even including the brain. It is vital
that this diagnosis is made (a simple blood test for
antiphospholipid antibodies is available in most major
hospitals). Pregnant women who have antiphospholipid antibodies
have a tendency to clot the placenta and develop recurrent
miscarriages and these can be prevented by diagnosis and
treatment. Although this syndrome was first discovered in lupus
patients it is now recognised that many, if not the majority, of
patients with Hughes’ syndrome have no other features of lupus
nor will they develop lupus in the future."
>The Lupus foundation says if
>you have like 4 of a possible 11 symptoms, you probably have lupus. Actually
>their test is kind of misleading (in my opinion). It's the American
>Association of Reumatoligists or some group like that that have perrected
>the test. With the srthritis symptoms, the rash and the sores in your mouth,
>it sounds kind of "Lupie" to me.
>
>Andy?
The 11 criteria can be found at SPECIFIC SYMPTOMS about half way down
this page:
http://www.northeastlupus.org.uk/hughfaq.htm
Note that you have to have 4 of them, *but not all at the same time*.
You might also find the pages linked from here to be useful (you need to
type #INFO not #info - or cut'n'paste):
http://www.northeastlupus.org.uk/index.htm#INFO
They cover:
a list of some of Lupus's most common symptoms.
some suggestions on how to cope with Lupus.
a more detailed description of the disease.
a description of the laboratory tests you may have.
>Keep up your research, there's lots of info out there on the internet and
>again, I think Andy said this week if your info is older than 10 years, it's
>out of date.
You think correctly 
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
| Nicole H 2005-01-11, 2:08 am |
| Please keep in mind, you can have lupus and a negative ANA (the test usually
done). Keep a journal of your symptoms and the situation in which they
occur... take all this to your rheumatologist.
In many cases, it takes years and many doctors to make a lupus diagnosis.
It's more a diagnosis of omission than anything else.
Nicole
"TMB" <trishbailey@gmail.com> wrote in message
news:1105061990.095264.182130@z14g2000cwz.googlegroups.com...
> I was hoping to introduce myself and ask for your thoughts on my
> symptoms. I am a 33 year old White and Native American woman. At the
> end of October I went to get a haircut and the hairdresser discovered a
> patch of alopecia. I have since lost another small patch of hair.
>
> Towards the end of November I woke up one morning with severe joint
> pain in what seemed like every joint in my body. It lasted for a full
> month. At one point it hurt so much to move that I had to have someone
> help me put on my coat.
>
> I started to think I might have lupus and started looking for
> information (I also saw the doctor and have had various tests run see
> last paragraph).
>
> Additional symptoms that I think might indicate lupus are
> 1. I get a butterfly shaped blush on my cheeks that will last for
> various amounts of time from several hours to several days and then
> just disappear. This was actually noticed initially by my coworkers and
> ob/gyn not me.
> 2. I have asthma
> 3. Whenever I have a cold I get mouth sores on the roof of my mouth and
> the sides of my tongue. Sometimes I get these when I am not sick, the
> first time it happened I was in college and the sores got so bad I
> could not eat and my face swelled up. This went on for more than 10
> days, then I woke up one day and my mouth didn't hurt and within a day
> or two they were all gone. It has never been this bad again.
> 4. Migraines, I get one or two a month, have always suspected they were
> hormone related.
> 5. One short (4 mos) bout of clinical depression approx 3 years ago.
> 6. Muscle aches. I regularly have twingy muscle aches in thighs that
> are not exercise or strain related.
> 7. I don't know if it would be considered extreme fatigue, but I am
> ALWAYS feeling and complaining of being tired but not necessarily
> sleepy.
> 8. Cysts on my ovaries
> 9. Occasional night sweats
> 10.IBS
>
> I saw the doctor after the hair and she said she thought I just had
> alopecia but tested me for hypothyroidism (which I did not have). I
> went back in to see her during the joint pain episode and she ran a
> bunch of tests (including something for ANA) and I am still waiting on
> results. I think this sounds very much like I have lupus and am just
> coming off a flare-up. What do you think? If my tests come back all
> normal, how much should I push for trying to figure out what is wrong
> since I am feeling pretty good now?
>
> Thanks.
>
| |
|
| All tests came back normal.
They ran a CRP that came back <20
A rheumatoid factor of 5
hematology all normal
two types of hepatitis and a syphillis test all negative
ANA screen negative
So the doctor said just pay attention to any possible symptoms for the
next 4 months and if I have any problems she will either rerun all the
tests or send me to a rheumatologist.
I am thankful that everything indicates I do not have lupus, but
honestly am frustrated that don't know why I was in that much pain for
a month.
| |
|
| TMB wrote:
> All tests came back normal.
> They ran a CRP that came back <20
> A rheumatoid factor of 5
> hematology all normal
> two types of hepatitis and a syphillis test all negative
> ANA screen negative
>
> So the doctor said just pay attention to any possible symptoms for the
> next 4 months and if I have any problems she will either rerun all the
> tests or send me to a rheumatologist.
>
> I am thankful that everything indicates I do not have lupus, but
> honestly am frustrated that don't know why I was in that much pain for
> a month.
Stress or sun exposure can cause flares. Flares come and go
You've got too many suspicious signs of (possible) lupus.
Keep copies of your labwork and diary your signs and symptoms.
Do keep in touch with the rheumatologist
The criteria is signs/symptoms and labwork (4 of 11? criteria).
Do some readiing so you know more about it.
http://www.ghg.net/schwerpt/ASLFAQ/index.htm
I'm sorry I don't answers to insurance questions except it's better to get
insurance before you are diagnosed. Otherwise, you may be considered
high-risk and have to pay more.
I already had 2 small term life insurance policies. My understanding is
you pay more faster for term life insurance but save on interest or
something because it's pain off earlier, then you get dividends which can
be added to the value of the policy or withdrawn usually annually, whereas
the other type you pay longer. You'd have to talk to an insurance agent
that you trust. Or ask your parents for a referral.
If there's disability plan at work, get into it if you can. Or get some
opinions from people you trust. Some people are over insured too. Then
there's SSD or whatever the government disability plans are. Maybe
Michael's posts explained some of that? I'm from Canada so don't know much
about that stuff.
Even if you don't have Lupus, autoimmune disorders can be similar to other
autoimmune disorders and you may need it as more information and time
occurs.
Stay with us, at least for a while. I'm not here very often to post, but I
do read all the posts.
Maybe answers will come eventually.
If you're planning on having kids, read about Hughes ( I don't have time
to see if someone else told you about that).
J
| |
|
| Hi,
M name is Beth and I haven't visited in awhile. :o) Sometimes I am not
all at home upstairs (or at least it isn't accessible).
I'm happy for you that your tests came back negative. Your symptoms kind
of sounded like you had "Parvo" to me; it is also called 5th disease. It
can linger in adults for several months on and off. If your interested,
look it up.
Also, maybe what you had in college was mono or oral herpes (cold
sores). If you get sores in your mouth again L-Lysine works wonders.
College and stress go hand in hand our immune systems slack under
stress.
Now someone is going to say why don't lupie's feel better when we're
stressed than? Ah, because when our immune system is not working well we
get regular sick. We always forget that we get "regular" sick too. :o)
Than our lupus flares and well- y'all know the rest.
Hugs,
Beth
| |
|
| In article <1105663393.195499.306610@z14g2000cwz.googlegroups.com>, TMB
<trishbailey@gmail.com> wrote
>All tests came back normal.
>They ran a CRP that came back <20
>A rheumatoid factor of 5
>hematology all normal
>two types of hepatitis and a syphillis test
I think this is the Wasserman test - it can be positive in some people
with Lupus.
"Care is needed in telling the patient the result of this test."
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
| In article <41E726E9.C335FF32@execulink.com>, J <example@example.net>
wrote
[]
>Stress or sun exposure can cause flares. Flares come and go
>You've got too many suspicious signs of (possible) lupus.
>Keep copies of your labwork and diary your signs and symptoms.
Good point. I'd add that some effects (like the sun) can take a few days
to show, so you may need to note brief (*) details of each day.
"Brief" because if you write War And Peace, no medic will be willing to
read it.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
|
| |
|
|