I've received comments from some of you regarding my neuro's explanation of
TM vs MS, as well as more questions.
First I'll answer your general questions, then I'll get to specifics.
Let me quote some information from what I consider the most valuable
reference book in my library today: the AMA (American Medical Association)
Encyclopedia of Medicine. My husband Charley bought this for me the first
night I landed in the hospital 3+ years ago, with the simple words, "Here you
go ... start learning about your body." It has been an invaluable resource
for me ever since!
I believe that knowledge is power, and any doctor who thinks of him/herself
as being so omnipotent as to keep a patient in the dark, I refuse to deal
with! There used to be a time when I was in awe of doctors and simply
followed their instructions without question, but when one of them almost
took my life at age 34 (inexcusable surgery and post-operative care), I said,
"No more!"
So much for my passionate feelings on *that* subject.
I read the following explanation of TM in the AMA Encyclopedia 3 years ago,
and at the time it didn't make much sense to me. Today, because I've read a
*lot* about MS, and whatever I could find on TM (which is little), I
understand the AMA's explanation of TM much better. Perhaps it will help
you, too.
"MYELITIS: Inflammation of the spinal cord. Myelitis may be the result
of a viral infection -- for example, 'poliomyelitis' (commonly called polio),
'measles,' or 'herpes simplex.' The illness starts suddenly with headache,
fever, neck stiffness, and pain in the back and limbs, which are followed in
some cases by muscle pain and weakness, and eventually paralysis."
"TRANSVERSE MYELITIS is a type of myelitis in which there is
inflammation of the spinal cord around the middle of the back. It may follow
a viral illness but often occurs without obvious cause. Common symptoms are
back pain and gradual paralysis of the legs. Many people recover, but some
are left with spastic paralysis of the involved limbs."
Now I'll quote from the most recent brochure published by the NMSS (Nat'l MS
Society) which explains MS in simple terms:
"What is MULTIPLE SCLEROSIS? Multiple sclerosis is a chronic disease
affecting the central nervous system. Its symptoms may run the gamut from
slight blurring of vision to complete paralysis. It is not contagious, and
it is rarely fatal. But it is unpredictable.
How is it CAUSED? Our bodies contain a fatty substance called myelin
which surrounds and protects nerve fibers of the brain and spinal cord (the
central nervous system). In MS, an immune system reaction causes a breakdown
in the myelin layer or sheathing." (The body actually attacks itself.)
"When any part of this myelin sheathing is destroyed, nerve impulses to and
from the brain are distorted or interrupted. The result is multiple
sclerosis, or MS -- multiple because many areas of the brain and spinal cord
are affected; sclerosis because 'scleroses' or hardened patches of scar
tissue may form over the damaged myelin."
The brochure goes into symptoms and general pattern of the disease, but I'll
stop there.
Once again, here's my own explanation. Transverse Myelitis is an
"inflammation" of the spinal cord, which can result in mild to very acute
symptoms, including paralysis. MS, on the other hand, is the "breakdown" of
parts of the myelin sheathing that protects the nerve fibers of the spinal
cord *and/or* brain. Scar tissue, called scleroses, form around the broken
parts, and it is these scleroses that affect the transmission of data (so to
speak) from the brain or spinal cord to the outward parts of the body. Thus,
MS is called a "demyelinating disease."
Transverse Myelitis is considered to be a once-in-a-lifetime experience. How
long it lasts depends on the amount of inflammation.
MS, on the other hand, is a chronic disease -- but that doesn't mean that
people get worse and worse with time. On the contrary! Statistics worldwide
show that 7 out of 10 fall into the RR-MS category (relapsing-remitting),
while 3 out of 10 are CP-MS (chronic-progressive). And even within these
general categories, there are huge fluctuations. I can personally attest to
the fact that one can lead a fairly normal life with MS, and I have many MS
friends who will say the same thing.
Here's another quote from the new NMSS brochure about how and when MS is
diagnosed:
"To make a conclusive or definitive diagnosis, 2 factors must be shown: (1)
there must be evidence of many patches of scar tissue in different parts of
the central nervous system, and (2) there must have been at least 2 separate
exacerbations (attacks) of the disease."
How does TM and MS interrelate? It may never! It may be *solely* TM, or it
may be MS, with the 1st attack being TM.
I hope this clarifies the difference *and* the relationship between TM and
MS.
Now to comment on your specific questions:
To Carolyn: Your doctor's input about the moderate-size lesion on your
spinal cord *and* the 3 very small spots on your brain, as well as your
symptoms, suggest to me that you will likely be diagnosed with "probable" MS
one of these years. This is nothing to worry about! Yes, you may have to
make some adjustments in your lifestyle, but believe me, MS *can* be managed.
I understand your frustration when you say "too many 'mights' for me," but
the vast majority of MSers are diagnosed by *exclusion* (of other illnesses
or diseases that mimic MS) rather than by *definitive* diagnosis. So,
prepare yourself mentally to be welcomed by the MS Community. It has a lot
of wonderful citizens! Oh, and btw, don't worry about the tingling around
your mouth and lips. I sometimes get it in my nose, and when that happens, I
think of myself as Samantha in "Bewitched."
To Barbara: I'm not about to get involved in a discussion with your neuro
because I'm not a doctor. But if he were my neuro, I'd sure question his
explanation: "My neuro said that the only way to be totally sure about the
lesions was to dissect them and obviously that isn't a viable solution!" He
may be right, but most neuros I know or have heard about from others offer a
more general explanation than such a drastic one.
To Al: In your message of 10/16/96, you said: "I would like to continue to
discuss TM and mental health but I would like to throw it out to the group
and ask if you believe if it is an important partof the treatment process."
Here's my opinion: I believe that psychotherapy can be helpful to *anyone*
who faces challenges in life, particularly those who have "ghosts" to bury
from the past. Gone are the days (thank God!) when psychologists and
psychiatrists were called "shrinks." I will gladly and openly admit that
I've had psychotherapy 3x in my life, and I can only say that the last time
(4 years ago) finally brought me complete peace. I was then able to proceed
into the 2nd half century of my life with total love and serenity instead of
periodic anger and non-acceptance of certain people in my life. That's the
reason for my "signature line" now. I found it in a calendar (anonymous
author), and to me, that said it all! "Heal the past. Live the present.
Dream the future." If *anyone* in this group ever wants to talk to me
personally about psychotherapy, write to me privately ... I'm here to listen!
Thanks also, Al, for your pat on the back about my volunteer work with the MS
Society. Like you, I found the chapter that I first contacted 3 years ago
tremendously helpful! My first support group picked up the pieces of fear
and depression when no one else would at the time (excluding Charley, of
course), and I vowed from that day on to "give back" as much as I possibly
could. It has truly been a rewarding experience!
To Don: I will make only one comment about your doctor's point of view, "One
of the reasons he felt it was ATM and not MS, was the amount of upper body
strength I had. My grip, my pushing ability, and my pulling ability all were
too strong for MS." Perhaps that's the case for *some* people with MS, but
it sure isn't for all. Most of my MS friends (including one who is CP-MS and
in a wheelchair) have great upper body strength. In my case, I firmly
believe it's genetic, because my maternal grandmother was a powerhouse of a
woman, and so is my mom. When I have MS episodes, my weakness is solely in
the lower parts of my body, as well as in my head (tingling and acute
momentary imbalance).
Last but not least, to Vicki: Dear, dear Vicki -- It's easy to feel guilty
about someone else's lot being worse than yours. I know ... been there, done
that, tick it off. But try to get over that feeling. You have *nothing* to
feel guilty about ... it is *not* your fault that someone else has to suffer
more than you!
Also, Vicki, I'm all for getting together sometime in the future as a group,
and your idea of South Florida is a good one. But first, we need more input
from others, and then teamwork to put the whole thing together. Some MS
groups do this on an annual basis, and I see no reason why those of you with
TM can't join in.
I will be attending Jean Sumption's "MS Bash" in Tucson, AZ, from Dec. 4-6.
I'm sure that if anyone in this group would like to attend Jean's bash, she
will welcome you with open arms!
***On TUE. DEC. 5, Jean is bringing in DR. RANDALL T. SCHAPIRO to speak on
MS.***
Here is Jean's introduction of Dr. Schapiro, which I've taken directly from
her Web Site. If you've never checked out Jean's Web site, DO IT! It is
truly *wonderful*!!! Words simply cannot express what a giving person she
is, but her Web site will give you an inkling. The address is:
http://aspin.asu.edu/msnews. Btw, Jean realized one of her dreams last year
when she established her own non-profit organization, the "International MS
Support Foundation."
One of the reasons I'm so excited about hearing Dr. Schapiro speak is that I
have every intention of cornering him to get his version of TM vs MS. With
all the work he's done on MS, I'm sure he also knows a lot about TM.
Now for the introduction of Dr. Schapiro:
"DR. Randall T. Schapiro is the Founder and Director of the Fairview MS
Center and Minneapolis Clinic MS Program. He is also Clinical Professor of
Neurology at the Univ. of Minnesota and on the Board of Directors at the
Jimmie Heuga MS Center in Colorado. Dr. Schapiro is an incredible speaker
and travels the world giving talks to those suffering from MS, their families
and the medical community. He educates with warmth, compassion and
understanding, but most importantly, he helps us see that even though we
suffer from a disabling disease, maintaining a sense of humor is vital."
I can't *wait* to hear Dr. Schapiro speak! I read his last talk given at the
Jimmie Heuga MS Center, and every word that Jean says about him is true.
Btw, you can download his last talk directly from Jean's Web site.
Well, folks, I've run out of time, and you've probably run out of patience
trying to read and absorb this missive.
Hope to see you in Tucson on Dec. 5!
Love and cheers,
Julie P.
<jooliep(AT)aol.com>
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~ Heal the past. Live the present. Dream the future. ~
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