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Medical Forum / Diseases and Disorders / Lupus / January 2009

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Pending diagnostic tests

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cshenk - 13 Dec 2008 11:10 GMT
Just saying hello.  Doc isnt sure but i hit 7 of 11 symptoms.  Took a bit to
find this one fitting all.

Tests soon.
LouB - 13 Dec 2008 13:44 GMT
> Just saying hello.  Doc isnt sure but i hit 7 of 11 symptoms.  Took a bit to
> find this one fitting all.
>
> Tests soon.

A lurker reports that, sadly, this group has very little activity and
some really unhelpful "nuts".  I suspect there are better support
places.  Try google.

Lou
George Parton - 13 Dec 2008 16:15 GMT
> Just saying hello.  Doc isnt sure but i hit 7 of 11 symptoms.  Took a bit to
> find this one fitting all.
>
> Tests soon.

Are they testing for fibromyalgia?  This sounds familiar.

Whatever the tests are for, I wish you the best.

Please let us know the results.

George
cshenk - 15 Dec 2008 00:46 GMT
"George Parton" wrote
"cshenk wrote"

>Just saying hello.  Doc isnt sure but i hit 7 of 11 symptoms.  Took a bit
>to
>> find this one fitting all.

>> Tests soon.

> Are they testing for fibromyalgia?  This sounds familiar.

No, seems not related?  Thats muscular aches right?  This is mostly
degenerating joints which seem connective tissue related.

> Please let us know the results.

Will do George and thanks for the well wishes I trimmed!
William R.  Thompson - 14 Dec 2008 11:26 GMT
> Just saying hello.  Doc isnt sure but i hit 7 of 11 symptoms.  Took a bit
> to find this one fitting all.

> Tests soon.

I hope the test results are good for you.

Here are two sites that belong to other regulars on this group:

http://www.northeastlupus.org.uk

http://members.shaw.ca/tiderington/

--Bill Thompson
Andy - 14 Dec 2008 13:24 GMT
[
>Here are two sites that belong to other regulars on this group:
>
>http://www.northeastlupus.org.uk

on which at http://www.northeastlupus.org.uk/hughfaq.htm (half way down)
you can find what's probably your list of eleven...

SPECIFIC SYMPTOMS
To help distinguish LUPUS from other diseases, physicians of the
American Rheumatism Association have established a list of 11
abnormalities which, when combined, point to LUPUS. To make a diagnosis
of LUPUS the patient must have had at least FOUR of these 11
manifestations at any time since the onset of the disease.

MALAR RASH: Fixed red rash over the cheeks
DISCOID RASH: Red patches of skin associated with scaling and plugging
of the hair follicles
PHOTOSENSITIVITY: Rash after exposure to sunlight
MUCOSAL ULCERS: Small sores that occur in mucosal lining of mouth and
nose
SEROSITIS: Inflammation of the delicate tissues covering internal organs
and abdominal pain
ARTHRITIS: Very common in LUPUS, usually pain in the joints
RENAL DISORDERS: Usually detected by routine blood and urine analysis
NEUROLOGICAL DISORDER: Seizures or psychosis
HAEMATOLOGICAL DISORDER: Haemolytic Anaemia, Leukopenia,
Thrombocytopenia
IMMUNOLOGIC DISORDER: Tests on LE cells, anti-DNA and anti-Sm antibodies
ANTI-NUCLEAR ANTIBODY (ANA TEST): When found in the blood and the
patient is not taking drugs, it is known to cause a positive test for
LUPUS in most cases, but is not necessarily conclusive

Signature

Andy Taylor [Chair, N E Lupus Group].
<URL:http://www.northeastlupus.org.uk>

cshenk - 15 Dec 2008 00:40 GMT
> SPECIFIC SYMPTOMS

> MALAR RASH: Fixed red rash over the cheeks
yup

> DISCOID RASH: Red patches of skin associated with scaling and plugging of
> the hair follicles
seem to be developing this on arms

> PHOTOSENSITIVITY: Rash after exposure to sunlight
yup

> MUCOSAL ULCERS: Small sores that occur in mucosal lining of mouth and nose
see below

> SEROSITIS: Inflammation of the delicate tissues covering internal organs
> and abdominal pain
nope

> ARTHRITIS: Very common in LUPUS, usually pain in the joints
yes

> RENAL DISORDERS: Usually detected by routine blood and urine analysis
> NEUROLOGICAL DISORDER: Seizures or psychosis
> HAEMATOLOGICAL DISORDER: Haemolytic Anaemia, Leukopenia,
Nope

> IMMUNOLOGIC DISORDER: Tests on LE cells, anti-DNA and anti-Sm ANTI-NUCLEAR
> ANTIBODY (ANA TEST): When found in the blood and the
Pending tests

This list isnt quite the one from the lupus.org site.  Their's is more
symptoms vice actual test results.

a.. Achy or swollen joints
    yes, and loose ones with connective tissue damage, not prone to
swelling nor have I ever been even when I broke a bone.

a.. Persistent fever over 100 degrees
    yes, comes and goes.

a.. Prolonged, extreme fatigue
    Abnormal fatigue common, growing more common.  Had chocked this up to
back pain causing restless sleep but Doc says maybe, maybe not after many
questions.

a.. Skin rashes, including a butterfly shaped rash across the cheeks and
nose
    have perfect butterfly, plus marked spot on arms, both photosensitive

a.. Pain in the chest on deep breathing
    Just went through a bout of this, thought I was getting Bronchitis but
no cough, went away, had recent chest xray due to standard annual mamogram
etc and nothing noted but they weren't looking for this. Will have referral
Doc pull that up from the computer.  Have another a year ago when MRI was
done on back that they can use to match against.  May not be optimal for
this purpose but they are on record so won't hurt to have them look.  The
'odd like bronchitis' recent event may really have been incipient bronchitis
that I fought off.  I've not had it go that way before, but it is a single
isolated instance about 2 weeks ago.  Lasted about 3 days and went away.

a.. Anemia
    dunno, tests pending

a.. Excessive protein in the urine
    dunno, tests pending

a.. Sensitivity to sun or ultraviolet light
    yes, lovely redder face and spots on arms flare quite a lot.
Inordinant reaction compared to exposure time.

a.. Hair loss
    yes though hardly going bald.  Naturally have extremely thick hair
which is now 'near normal'  Also nails thinning and splitting (may or may
not be related, Doc asked though).

a.. Abnormal blood clotting problems
    Not that I know of

a.. Fingers turning white and/or blue in the cold
    got asked instead about numbness and tingling (yes)

a.. Seizures
    Nope

a.. Mouth or nose ulcers lasting longer than two weeks
    Sporadic oddities on roof of mouth, oddly painless, not a frequent
thing, less than 1 a year, reactive to hot spicy foods but little else.
Last about 4 weeks? Dentist found them interesting but no sign of infection
of tooth root.  Not further persued.

Not looking too great eh?  Still, tests not yet done and it might be
something else.  Not much mentioned on any page I saw, but Doc knows about
it is another system it often damages is connective tissues.  Not quite the
same as the arthritis angle but related.  I have DDD with 3 herniated discs
and several abnormal ones.  Wonky wrists with carpal tunnel like symptoms
but tests show it's isnt carpal tunnel (some is related to one of the
herniated discs), wonky ankle joint, wonky knee, and both elbows.  They are
looking for underlaying causes of so many joints going 'wrong' in one
person.

One thing is sure it seems.  Rosescea (sp?) or lupus for the face.

"Systemic lupus erythematosus (SLE) attacks multiple systems in the body
which may include: the skin, joints, lungs, blood, blood vessels, heart,
kidneys, liver, brain and the nervous system."

"Drug-induced lupus may develop after taking certain prescription
medications. Symptoms generally disappear, within weeks to months, after the
drug is discontinued.
See: Drug-Induced Lupus Erythematosus"
I add the drug induced as I was once on INH for 6 months and currently am on
some drugs which may not be optimal but will have to be reviewed. (Keflex
for a long term skin condition, taken 'as needed' for flareups).  Doc was
real interested in a skin condition 'hydratinitus suppervita' (close
spelling, not dead on) but seemed to indicate it was a separate issue other
than the drugs that had been used off and on for 20 years now for it?

Anyways, got a yes for 7 of those, a maybe for some, and tests not taken yet
for blood or urine.

Recon my chances of not having it seem slim but I'm hoping it's not and it's
something less scarey to have.  Pain and I are old friends though I wish
he'd take a vacation now and again!  (grin)
Andy - 15 Dec 2008 09:39 GMT
[]
>This list isnt quite the one from the lupus.org site.  Their's is more
>symptoms vice actual test results.

It may have been rewritten since what's on my site was published. Will
check.
[]
>a.. Sensitivity to sun or ultraviolet light
>     yes, lovely redder face and spots on arms flare quite a lot.
>Inordinant reaction compared to exposure time.

Several people find that the effect isn't immediate, but can be a day or
two after the exposure.
Signature

Andy Taylor [Chair, N E Lupus Group].
<URL:http://www.northeastlupus.org.uk>

cshenk - 16 Dec 2008 01:01 GMT
> []
>>This list isnt quite the one from the lupus.org site.  Their's is more
>>symptoms vice actual test results.
>
> It may have been rewritten since what's on my site was published. Will
> check.

Not a problem!  Your's insnt 'wrong' (who am I to say so!) but theirs is
more understandable to me.

> []
>>a.. Sensitivity to sun or ultraviolet light
[quoted text clipped - 3 lines]
> Several people find that the effect isn't immediate, but can be a day or
> two after the exposure.

Takes a few hours and mostly I notice the arms (not being one to stare in
mirrors alot).
cshenk - 15 Dec 2008 00:40 GMT
"William R. Thompson" wrote

>> Just saying hello.  Doc isnt sure but i hit 7 of 11 symptoms.  Took a bit
>> to find this one fitting all.
>
>> Tests soon.
>
> I hope the test results are good for you.

I hope so too.  What will be, will be though.

> Here are two sites that belong to other regulars on this group:
>
> http://www.northeastlupus.org.uk
>
> http://members.shaw.ca/tiderington/

Thanks!  Once I have the tests and feedback for sure, I suspect I'll be in
there.
Sherry - 15 Dec 2008 16:18 GMT
> Just saying hello.  Doc isnt sure but i hit 7 of 11 symptoms.  Took a bit
> to find this one fitting all.
>
> Tests soon.
Welcome to the group.  Normally we have more people who are active on the
group.  We do have some people who have many years of experience with the
many different faces of Lupus...seems they have been quiet because of the
spam and other bs that has been posted of late.

If you want to read up on Lupus I would suggest that you get "The Lupus
Book" by Daniel J Wallace, M.D.  2nd or 3rd Edition.  I suggest the 2nd
edition first and then the 3rd.  It has sure helped many to understand the
disease.

Once again welcome to the group.

Sherry
cshenk - 16 Dec 2008 01:13 GMT
> "cshenk" wrote

>> Tests soon.

> Welcome to the group.  Normally we have more people who are active on the
> group.  We do have some people who have many years of experience with the
> many different faces of Lupus...seems they have been quiet because of the
> spam and other bs that has been posted of late.

My spam filters killed well over 1/2 the traffic as I joined in, then I got
rid of all the rest (mixed lots going back to 2005 and so) to let it
rebuild.  Have only what's been posted since my entry note.  Spam is a sad
but true fact of newsgroups.  I combat what I can, and ignore the rest.
See, I have this friend called 'Del' sitting right there on my keyboard!  I
just pat him on the head and he makes all the nasties go away.  Neat system
eh?

> If you want to read up on Lupus I would suggest that you get "The Lupus
> Book" by Daniel J Wallace, M.D.  2nd or 3rd Edition.  I suggest the 2nd
> edition first and then the 3rd.  It has sure helped many to understand the
> disease.

Am waiting testing for now.  Scaring myself silly is probably not very
efficient at Xmas time.  My appointment is for 7Jan for review.  Presumably
blood and urine tests later as this one is the dermatologist to rule out
simpler roseacea (sp?).  I'm told if the dermotologist doesnt refer for
testing, to go back to the earlier Doc who will put in for it.  Military
medicine system quirks there.  He has to recommend a demotologist first but
aint dumb and if he doesnt like what they say and thinks more testing is
needed, he can do that then.

> Once again welcome to the group.

Thanks Sherry!  But I'm sure all here will understand if I wish I had no
reason to _be_ welcomed to the group! (evil grin).
Sherry - 16 Dec 2008 17:00 GMT
>> "cshenk" wrote
>
[quoted text clipped - 31 lines]
> Thanks Sherry!  But I'm sure all here will understand if I wish I had no
> reason to _be_ welcomed to the group! (evil grin).

My bad!  Yes, we all can understand the wishing for having no reason to join
the group.

I was raised with Military medicine many moons ago and my Mom still recieves
her care via TRICARE...but what you describe is not much different than what
we get in the world of civilian medical care when one has insurance and of
course both are far better than those without either system.

Don't stress and scare yourself while waiting for diagnois or ruling Lupus
out.  Remember that Lupus and living with Lupus might mean taking a few meds
and learning just what triggers your body's reaction and then adjusting your
life a bit.  Sun block when you are outdoors, avoiding long periods of
exposure to the florescent lights in stores like Wal-Mart should help with
your dermy reactions.  Avoiding or limiting the amount of "nightshade" plant
foods from your diet can also be helpful.

Good luck on the 7th and we will add you to our thoughts and prayers.

Sherry
cshenk - 07 Jan 2009 17:19 GMT
> "cshenk" wrote

>> Am waiting testing for now.  Scaring myself silly is probably not very
>> efficient at Xmas time.  My appointment is for 7Jan for review.

>>> Once again welcome to the group.
>>
[quoted text clipped - 3 lines]
> My bad!  Yes, we all can understand the wishing for having no reason to
> join the group.

;-)

Well, had my appointment.  Doc is running all sorts of tests but until they
come back, little known yet.  I hit 7 of 11 symptoms but several of them
only mildly so may be misleading or may be still in early stages.

They are running some 10 or so blood samples through all sorts of tests.
Followup in 5 weeks. (I gather if the tests show a definate yes, I'll get an
earlier call but not sure).

> I was raised with Military medicine many moons ago and my Mom still
> recieves her care via TRICARE...but what you describe is not much
> different than what we get in the world of civilian medical care when one
> has insurance and of course both are far better than those without either
> system.

Yup.  The awkward part for now if can't file my disability claim yet.

> Don't stress and scare yourself while waiting for diagnois or ruling Lupus
> out.  Remember that Lupus and living with Lupus might mean taking a few
[quoted text clipped - 3 lines]
> should help with your dermy reactions.  Avoiding or limiting the amount of
> "nightshade" plant foods from your diet can also be helpful.

Thanks!  Now to await test results.
Andy - 07 Jan 2009 18:58 GMT
>Well, had my appointment.  Doc is running all sorts of tests but until they
>come back, little known yet.  I hit 7 of 11 symptoms but several of them
[quoted text clipped - 3 lines]
>Followup in 5 weeks. (I gather if the tests show a definate yes, I'll get an
>earlier call but not sure).

Sounds as if you're getting properly looked-at. For many, getting to
that stage is the biggest problem!
Signature

Andy Taylor [Chair, N E Lupus Group].
<URL:http://www.northeastlupus.org.uk>

cshenk - 08 Jan 2009 17:42 GMT
"Andy" wrote
cshenk wrote

>>Well, had my appointment.  Doc is running all sorts of tests but until
>>they
[quoted text clipped - 8 lines]
> Sounds as if you're getting properly looked-at. For many, getting to that
> stage is the biggest problem!

Yes, I am fortunate in that!  The current Doc (dermatologist) is the one who
screens for Rosecea (sp?) vs Lupus.  US Navy medical system (Tricare is the
name and it's all US Military branches).  He's got me using Noritate on the
face which if it is rosecea, will show a change in the malar rash.  I gather
if it's lupus, it will not show any change but not cause any harm either.

He spent a fair amount of time examining my fingers, noting that my nails
have grown weak over the past 3 years.  He didnt see any signs of RA like
symptoms but agreed something is going on.  Until the tests come back, he
can't say more other than it may be something else combined with a
sun-sensitive face rash.  He did not see sign of ?discoid? skin involvement.

He did say some folks, especially in early stages or those slower to develop
full formed lupus, may not show results on blood tests but *most* will.  We
laughed as he has to also test for syphillus as it is another one of the
great mimic diseases even though my current medical profile rules this out
as well as some other antibiotics I have to take pretty regular would kill
such as a by-product.

From the page you post:

a.. Joint aches and pains

a.. Permanent rash over cheeks

a.. Extreme fatigue and weakness
(this one comes and goes)

a.. Oral ulcer
(Not a frequent thing, have had the occasional painless weird thing on roof
of mouth)

a.. Hair loss
(First note I have seen of this being related, yes, mentioned it to the Doc
but he's not picking up on it.  Reason is I had *extremely thick* hair and
now have normal.  Gonna have to wait and see, this could be age related?
I'm 49).

a.. Rashes from sunlight
( You can actually feel the bumps if I am over exposed and well before any
sunburn would happen.  I avoid the sun pretty much).

a.. Recurring flu-like symptoms and/or night sweats
(Yes to both, matter of level here though and may not be quite the lupus
level.  About every 4-6 weeks I run a low grade fever and feel like I'm
comming down with a flu, but do not.)

And below, possible but unsure.
- Inflammation of the tissues covering internal organs with associated chest
and abdominal pain
(I've been getting sporadic 'chest hurts when breathe deep for 2 days or so
that feel like bronchitis but no cough.  Just a mild temp. This happens
about every 3-4 months.  I have had several instances of bronchitis in the
past and was for a time considered possibly 'chronic bronchitis' patient but
that went away)

As you can see, it is confusing and may be a matter of 'level' of these
symptoms.  Either way, Doc says to not worry and wait for test results.
Shelagh - 09 Jan 2009 04:51 GMT
What will likely show up re the 'syphillis' test (VDRL screening) is a
false-positive result for it ... meaning a negative for you,
but
the result is almost always there in that form
with a lupus diagnosis... but then again....
I had it found at age 16 and yet wasn't dx'd until 28!!
Go figure ... there is so much that goes into getting that all
important diagnosis to cover all your symptoms!
There are the medical history and current labs and symptoms
along with the genetic background,
which all play into the dx....
as well as the 11 criteria of the ACR as you are finding.
I wish you great luck... in that your findings are negative
for S Lupus E,  as it really is a nasty illness,
but I also hope for you that you do get to the
bottom of your symptoms with  some concrete answers!
hugs,
Shelagh
Lupus Invisible In Plain Sight  @  http://members.shaw.ca/tiderington

"cshenk" <cshenk1@cox.net> wrote in message
<quote>  We
> laughed as he has to also test for syphillus as it is another one of the great mimic
> diseases even though my current medical profile rules this out as well as some other
> antibiotics I have to take pretty regular would kill such as a by-product.
</quote>
 
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