Hi Sam ~
I usually tell people it's similar to poliomyelitis...but hits one area
of the spine rather than several areas.
Everyone seems to relate to that. Then if they want more details I
explain further.
**shrugs**.....:)......works for me.
~ Lynn ~
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Date: Fri, 24 Jul 1998 10:39:17 -0400
From: Sandra Melville <luthyen(AT)erols.com>
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Subject: Re: a name for the general public..
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When trying to explain TM, even to for example nurding staff, I just call it
"single sclerosis". Most folks relate to that, and it is correct for effects of
demyeninating disease no matter where we start from, I think-demyelnization
effects are individual to each of us within the broad spectrum of effects.
::shrugs:: Works for me..
Sam
SHIGETTE(AT)aol.com wrote:
> In a message dated 7/23/98 7:51:19 PM Pacific Daylight Time, jones(AT)tdl.com
> writes:
>
> <<<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
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