On 10/17/96, Joan (Kerry's wife) wrote:
>Hello all,
>Just rec'd an e-mail from a "silent" AOL watcher of the list group. Julie,
who has >been on the list for a couple of months and was the first person who
contacted >Kerry and I way back when, has some news to share. She will be
posting soon ... <cut>
>She has a new neuro due to relocating, and LOVES him. He ran an MRI the
other day, and she has no new lesions, and her MS is not causing her any new
symptoms. (HOORAY) At any rate, Julie decided to run with the ball and ask
THE QUESTION...... What is the difference between TM and MS....She got a
great answer "the simplest, yet most thorough, explanation I've ever seen or
heard." So, she said she will post it when she is able to put it into words
that we can all understand.
>Keep checking, and BEWARE....She LOVES to write REALLY long letters!!!!!!!!
Hi, Joan -
Moi? Write long letters? Nawww..... :-) :-) :-)
Well, yeah, it's true, folks. So grab a cup of coffee and r-e-l-a-x.....
I've been reading your messages since July '96 and have been reluctant to
tell my story until now, for several reasons: 1) In comparison to many of
you, I consider my own experience with TM mild and don't want to offer any
false hope; 2) I didn't have any information about TM that you didn't already
have; and 3) In general, I'm not one to open my mouth until I have something
of value to add. But then LOOK OUT!!!
Yesterday I received a call from my new, *wonderful* neurologist. Now I'll
tell my story. Then I'll share with you what this kind, gentle man told me
about Transverse Myelitis vs Multiple Sclerosis. *Finally* an answer that
seems logical. *Finally* a missing link that makes the puzzle more complete.
Now I'm *thrilled* to open my mouth!
I had TM almost 23 years ago -- in early '74. The tingling and numbness
(except for my arms and hands) went from toes to breasts and lasted about 3
months, then receded exactly the same way it started. In 1974, doctors
didn't know as much about neurological disorders as they do today, and my
doctor at that time thought I might be lacking in Vitamin B12. Interestingly
enough, I've recently read research abstracts on MS, in which there appeared
to be a correlation between MS and the lack of Vitamin B12 -- or I should
say, the inability of people with MS to *absorb* sufficient quantities of
B12. But that's another story.
For the next 19 years, I went on with my life. 3 years ago, at age 49, I was
diagnosed with MS. In the previous 30 years, I'd been married 3x, had one
child of my own and 6 stepchildren, went to university twice, and enjoyed a
successful career. I was busy!
At age 31, I was almost killed in a bank robbery that left its mark
psychologically for the rest of my life. At age 34, a simple surgery went
terribly wrong and required 3 more surgeries to put the pieces back together
again. I mention all this because I am firmly convinced that stress *does*
have an affect on a body that may have already been susceptible to certain
diseases.
'93, for me, was the "Year from Hell." Thank God for Charley, my teddy bear
of a husband (#3), without whom I wouldn't have survived -- at least
mentally! After 2 hospitalizations and umptee-um tests, 2 neuros who
couldn't figure out what I had -- one of whom put me on a dozen or so
medications that didn't help -- we finally ended up at Stanford Univ. Neuro
Clinic and got some answers. It was then that we found out the name of the
condition I'd had in '74 -- Transverse Myelitis. Tingling and numbness from
toes to breasts, we were told, was "classic" of TM. Ever since then, Charley
has called my TM "tingling from toes to tits" -- perhaps a crude definition,
but one that's rather appropriate, I think. You'll have to forgive us,
folks, but we both have a wicked sense of humor! :-)
When we were told about TM, we asked no further questions, and no further
explanation was offered. In '93, we were more concerned about my future with
MS than trying to dissect what had happened 19 years earlier.
Then came my involvement with the MS Society, my venture into Cyberspace, and
ultimately your group. I must give credit where credit is due. Thanks, Joan
& Kerry, for introducing me to Jim. And thanks, Jim Lubin, for making it
possible for all of us to support one another! You are indeed an
inspiration!!!
In the last 3 years, while volunteering with 3 chapters of the MS Society
(we've moved 3x in the past year due to Charley's job), and in talking to
many other MSers and the few who have (or have had) TM, it's been my goal to
find some answers about TM. But I wasn't about to open my mouth until I had
something of substance.
What is TM? What causes it? How does it relate to MS? Does one cause the
other? What's the prognosis for both? Simple questions ... no simple
answers ... until yesterday!
Dr. R, my new neuro, will, for the time being, remain anonymous. I owe him
that courtesy. I'd hate for him to be suddenly inundated with letters from
people with TM. But I *will* pass this message on to him, if only to make
him feel good about his contribution to the TM Internet Club.
As Joan has already told you, I was thrilled to find out that my lesions were
the same as 3 years ago -- no new ones. In his words, "That's good! That
means your MS won't be causing you any new symptoms." *That* was the news
I'd been wanting to hear. *Now* I could get on with a real exercise program
to take off the 60 extra pounds I've gained in the last 3 years. *Now* I
could pursue my dreams with renewed vigor, for I had nothing to fear.
While I had this gentle man on the phone, I thought, "OK, Julie, go for
broke." "Dr. R," I asked, "Can you explain to me what the difference is
between Transverse Myelitis and MS, and if and how they're related? Can
Transverse Myelitis lead to MS?"
What I am about to share with all of you is what I recall from my
conversation with Dr. R. I will paraphrase the conversation. If any of it
is incorrect, I'm sure Dr. R. will straighten me out! Right, Doctor?
Dr. R.....Transverse Myelitis is an inflammation of the spinal cord. MS is
demyelination. Transverse Myelitis can be caused by MS, but we've found that
more often it's caused by a virus.
J.....Hmmm, I'm confused. From what I've read and heard the last 3 years,
Transverse Myelitis sometimes leads to MS. How can Transverse Myelitis be a
*cause* of MS, yet later *lead* to MS?
Dr. R.....I don't blame you for being confused. Let me see if I can explain
it another way. As you know, MS is only diagnosed if there is more than one
episode of symptoms. Transverse Myelitis may be one of those episodes. If
there isn't any other episode, it's Transverse Myelitis. If there are
others, it was probably MS to begin with. Some people have only one episode
of Transverse Myelitis in their lifetime.
J.....Ah, now I think I understand. Thank you, Doctor.
Do I really understand? Yeah, I think so.
Here's a direct quote from the AMA (American Medical Association)
Encyclopedia of Medicine: "-itis"-- A suffix meaning "inflammation of."
Virtually every organ or tissue in the body can suffer inflammation (the
most common form of tissue disorder), so "-itis" is by far the most common
word-ending in medicine.
Examples: Optic Neuritis -- an inflammation of the optic nerve. Otitis
Media -- an inflammation of the middle ear. Bronchitis -- an inflammation of
the bronchi. Transverse Myelitis -- an inflammation of the spinal cord.
As I have learned in the past 3 years, people with MS have anything from very
mild symptoms to seriously chronic, debilitating symptoms. It's clear to me
that the same holds true for people with Transverse Myelitis.
"There but for the grace of God go I." I cannot tell you how many times I've
told myself that in the last 3 years. God gave me 3 chances at a happy
marriage; a wonderful, sensitive young man I'm proud to call my son; 6 great
stepkids; 5 angelic grandchildren; a successful career; the opportunity to
work as a volunteer with several organizations; lots of energy and an
enthusiastic spirit; and mild MS. And now he has sent a man into my life who
seems willing to answer my complex medical questions. Am I a happy camper?
You betcha!
But that's not *your* story. Some of you, I know, are enduring what I wish
no one would have to endure, and I feel your pain. I wish I could reach out
to each and every one of you and take your ills away. I don't have that kind
of power.
One thing I do have, though, are 2 small ears and an awfully big heart.
They're open for you to enter any time I can be of help. I've known ever
since I was a young child that God had a mission for me, and that was to help
people. I've done my best to do that, but my work is only just beginning.
Please write to me anytime you need a friend ... a shoulder to cry on ... or
just a simple cyberhug.
I don't know you, but I love you.
Julie
<jooliep(AT)aol.com>
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