<<<This indicator of Lupus if approved will be of benefit to those searching
for another complement to the diagnosis of Lupus. Obviously to reduce the
damage to internal organ as you have unfortunately suffered from.>>>
Boy oh boy...What have I done? Dave, please go back and read about the Lupus
Anti-Inflammatory Drug....and carefully read my post...as you have quoted me
inacurately... In the info provided to you and I, it states, "The initiation
of this trial represents an important milestone as this drug is the first
COMPLEMENT INHIBITOR to enter into clinical development for the treatment of
autoimmune diseases..." In other words, this drug is meant to inhibit our
Complements, (a factor in all of our blood) thereby closing the gap of the
disease's activity...eliminating the overactive work of the immune system on
itself that causes the inflammation.. Hence the name, Anti-inflammatory...
Alton, forgive me for quoting you.. but you put it so eliquently, "Forgive me
for the strength of this reply, but the more we repeat unsubstantiated
conjectures, the more likely a newbie is to assume it is correct." Dave, as
you know...our comments, right or wrong, go to everyone on the list...We must
keep the facts we exchange true to their origin... If the information we
exchange is tainted with anything but the facts/truth... Who will ever take
our mission seriously? Think about it...In a laboratory, if something becomes
contaminated, it's instantly worthless, because it is no longer pure...
Dave, please let me explain....by using your opening statement as a classic
example....
<<<This indicator of Lupus if approved will be of benefit to those searching
for another complement to the diagnosis of Lupus. Obviously to reduce the
damage to internal organ as you have unfortunately suffered from.>>>
This is way off base...These are the facts as I stated in my post... 1) Low
C-3/C4 complement blood levels are one of the many "indicators" or criteria
that must be present for a diagnosis of Lupus to take place. 2) These blood
tests ("The indicator" that you refer to...) don't need to be approved as they
have been around for many years. 3) Complements are measured during a routine
blood test.. Hence my ability to know that my C-3/C-4 levels were low... 4)
Lupus patients/or researchers for that matter, don't seach for complements to
their diagnosis, either they exist or they don't. As I noted in my post,
"....complement levels C3/C4 tend to drop relatively low during a flare...
Please note that complements are very active during a flare...and usually are
a red-flag to the docs that something is brewing.
In your post, you referred only to this paragraph from my post... "Complement
levels are actually used as a diagnostic tool for lupus...as they are an
indicator as to the activity state of the disease. The more active the
disease, the more havoc it can wreak, such as in TM. If the ability of the
immune system attacking itself could be reversed in its early stages, TM and
many other diseases might be ancient history!" -- This paragraph only confirms
the 4 facts above, and does not seem to support your initial comment at all.
Because of this... I am tempted to quit right here... and tell those who read
your post to ignore it.. and move on... as things have been taken way "out of
context".. But, who would this help? Education, is the slow learning of a
subject that is unfamiliar to you...So
for this reason, I will continue... But, Dave, I will make this clear, if you
don't read this post carefully, I will not respond to another post....as I
would be spinning my wheels for nothing.
Ok.. now on to the rest of your questions....<<Although it is old as you said,
the list of complement levels you included did not include TM, MS, etc? >>
Dave, this comment shows me that you did not read the post carefully....And
maybe a more thorough study of this disease would be in order...The list I
sent, was not a list of "complement levels" as you state.... but was actually
"TABLE 2. THE ELEVEN CRITERIA USED FOR THE DIAGNOSIS OF LUPUS" ...stating the
different criterion and their definition... As far as I know, TM or MS was
never a criterion for anyone to have Lupus and would not be included on that
list.
<<But as you said, TM was your first diagnosis. You must of been treated for
TM which is the correct response for what was presented. >>
Dave, please don't turn things around to appear different as they are... There
is NO QUESTION THAT I HAD LUPUS BEFORE TM! And your statement that my TM was
my first diagnosis is actually incorrect...This is what I said in my post,
"...I actually had my first attack of TM before I was diagnosed with Lupus,
and my real TM diagnosis came after my second paralysis... " I went on to
say..."Lupus, as in TM or MS, is extremely difficult to diagnose...It is not
like there is an AIDS test...Wala.. either you have it, or you
don't...Unfortunately, it took 5 years to diagnose my Lupus....That first
paralysis was more than 6 months long...It was during that 6 months that a
positive diagnosis for Lupus was made because I was in a very active flare.
But, like I said, it took 5 years of accumulated tests!" Dave, tell me this,
if there was not an HIV test available...would Magic Johnson be considered
free of HIV for all these years?! The same applies to Lupus!
As for being treated for TM, that was also covered in my post, ".... During my
initial TM attack, my complement levels were the signaling factor to my
Internist that there was an underlying pysical problem.....If it wasn't for my
internist catching this, I wouldn't have been labeled the "Solumedrol Queen,"
and might not be walking today."
<<You should have recieved Corticosteroids which is also the correct treatment
for Lupus; I believe?>> Actually, steroids is NOT the routine drug of choice
for early stages of suspected Lupus/or even an advanced case for that
matter... Too many long term effects... Anti-malarial drugs top the list...for
controlling flares, and keeping the AnA levels down.
<<Please, you didn't mention how long it took for your diagnosis of TM? It's
my experience TM is not difficult to diagnose. I was diagnosed in four days
back in 86. And again diagnosed TM in two days at my second hospital where I
went through rehab. And even those with a stuttering onset can be diagnosed
early if there doctor is competent.>>
Well, I'm sure that there would be some people on this list who would have
trouble agreeing with your statement that "...TM is "not difficult to
diagnose. And even those with a stuttering onset can be diagnosed early if
there doctor is competent." You make this sound as if diagnosis for TM is
easy!!! NOT TRUE! First, please let me presume, that you don't have any
active underlying disease that contributed to your TM, and that your disorder
was clearly a cut & dry textbook case... Now imagine for one moment, being a
doctor presented with a patient with many different systemic factors occuring
all at once... NOTHING ABOUT THAT IS CUT & DRY!!! And therefore, I can not be
catagorized along with you in this area. Yet to answer your question, the
diagnosis of my TM occurred within 2 hours of my second paralysis... As soon
as I recognized the electrical sensations, while I was in the hospital being
treated for another condition... I notified my internist who called in the
best Neuro at Cedars Sinai, and he was there to document the onset almost
immediately... My paralysis occurs instantaneously...I have an electrical
shocking feeling... then nothing...it is that fast...
<<I'm curious how far did you recuperated after each episode of TM? For
instance are you in a wheelchair? Did each episode leave more scaring on
your spine? Did any of the episodes of TM, not have any lasting effects?
IMO what is needed is a genetic marker for TM or telling medical history
that warns of higher probability of TM.>>
As I explained in my post, three of my six TM attacks, took well over 6 months
to recover... The scarring on my MRI is so heavy that the docs say it should
be physically impossible for me to walk, have control, etc. Yet, I do.... My
gait is always improving...(because I believe IT IS!!!) When you are at the
bottom....there is no other place to look but up! I do have difficulty with
balance, have minimal muscle control, strength is low, etc.... I'll admit my
gait is very shakey at times, and I'm sure that some people who observe me
from afar, may think I look as if I have been drinking, etc. but I don't
care...They don't know what I have gone through to get where I am today... As
for the wheelchair, it is always by my side... One in the car, one in the
house...Shopping, walks around the block, etc.. are all done in my little red
racing chair!!!!
The lasting effect... is there is nothing more discouraging than to lose
something over & over again.... Never knowing when the TM might hit
again....Never knowing when my Lupus will flare again...I only have so much
strength, because of the complications from the Lupus, so each time it gets
harder & harder to "be strong" and fight this horrific nightmare.
That should answer all your questions....Now I am off to have another
wonderful day! τΏτ
Janie