Chronic Progressive TM [long]
Jackie (rubyjax(AT)teleport.com)
Sun, 20 Dec 1998 05:52:53 -0800
Dear friends.... **Happy Holidays!** :D
I've been waiting to hear back from my Neuro to get a final diagnosis.
What she said to me some of you might not agree with it, but I'll try
and explain it the best I can, and also to me it makes sense in my
experience.
First of all I have had this illness for 17 years. During that time I
have sought out Dr. after Dr. to try to get some type of dx. 2 years ago
was the first time I had even heard of TM. Most of the Dr.'s said I had
possible MS. I questioned that dx because I only showed 1 lesion between
C5-C7 on an MRI in 1994. So I went up to the Oregon Health Science
University to the MS Clinic, and that's when they dx'ed TM. Then I was
confused because I seemed to have been progressing over the years and
everything I had read said TM was an acute 1 time attack, and most
people eventually got better.
So back I went to OHSU 2 years later now, and after a ZILLION blood
tests, and full spine/brain MRI's, no other lesions showed up, except I
still had the original one in my neck. Blood work showed normal for
other suspected illnesses.
Now, because I definately have been progressing, ever so slowly,
because I have symptoms now that I didn't have with the very first
attack in 1981. My Dr. diagnosed me with having Chronic Progressive
Transverse Myelitis. She explained it this way.........even though I do
not have any more lesions to make it multiple sclerosis, TM is a MS-like
disease that starts off with a one time attack that leaves everyone with
different disabilities. It usually doesn't progress, but that one lesion
can get inflammed and cause an increase in original symptoms, or new
ones to appear.
So in my case I had the initial attack in 1981. It caused rt. sided
numbness, tingling, pain, swelling, and leg weakness, Lhermittes,
vibrating, sensory disturbances, and fatigue. I spent 10 days in the
hosp. doing pt with whirlpool baths for my arm/hand, light weights for
strengthening my arms and legs, bicycling for endurance. After 3 days I
was able to walk without assistance. The only meds. they gave me was
Antidepressents because they thought I was sufferring from Hysteria
[even though I was quite calm and cheerful during my stay] because at
that time nothing showed up on all their scans. [No MRI's yet]
After 10 days I went home with residual symptoms. I got back my legs,
most of the numbness was gone, and my strength was good. I still had
swelling and a glove-like feeling in my rt. arm and hand, but I could
still write, and use it for most other things.
For the next 5 years I stayed at this level and continued working, and
playing tennis, swimming, etc. raising 2 children, and the only time I
really noticed any symptoms [except my hand stayed swollen], was if I
overdid [which I did frequently], and at night my body would vibrate
from the inside. Explaining that to the Dr's was fun.........NOT!! :)
Then in 1986 one night after my nightly 1 mi. walk [which I had been
doing for months], I noticed when I got home I was so tired, and my
thighs started tingling and felt very heavy. [like cement legs] I still
continued to walk but each night it got harder and harder to move, so I
eventually stopped. I signed on to work at the kids school that year,
and when it was my days I could barely get myself up, and go. I was so
fatigued before I even started. The sensory stuff was back, and then the
pain started in daily. I was mostly put on Anti-inflammatories, but when
they didn't work, I was given a few vicoden once in awhile. They helped
with the pain, but I had a hard time tolerating them, as I had recently
developed an oversensitivity to most meds., and alcohol.
I couldn't finish out the school year, and eventually I started spending
more time in bed, then being up. I was so tired and sick like I had a
continual flu going on. I thought I had Chronic Fatigue Syndrome, or
something like it. I was even diagnosed with Fibromyalgia then too. I
was told later that I probably had MS, just on symptoms alone, no tests,
MRI's etc. to back it up.
In 1987 I came down with a very bad flu, and I couldn't lift my rt.
arm, and it took forever before I felt well enough to try and do very
much. My arm/hand was still disabled and swollen, but I could at least
lift and use it again after about 3 days. But, the fatigue was intense,
and the heaviness was great. [even though I had just lost 40 lbs] I
tried to homeschool my kids that year, and ended up stopping because I
was too sick to teach them well enough.
In 1988 after another bout with a flu I lost the use of my legs for
about 3 days. [seems like 3 is the magic number for me] It took a long
time to get over that flu too.
During these years too I was under a tremendous amount of stress, and
there were episodes of flare ups of the beginning symptoms, and heat
really started bothering me. My energy started to wane, and I was having
more bad days than good.
1991, we moved and the stress of moving, and the heat caused another
flare up, only this time I developed a foot drop in my rt foot. That was
new. [I also started putting more weight on, probably because I was
becoming less mobile.] In 1995 I lost my dad to lung cancer, and I
really started going down hill from then to now.
From 1991 to today, I have not had any remissions. I have now lost the
use of my rt. hand, I have spasticity I never had before, the fatigue is
bad if I try and do too much, I have increased pain which the Dr. told
me was Central Pain Syndrome from having an illness/injury to my spinal
cord. It's coming from the CNS. I get the Lhermittes every once in
awhile, mostly if I do too much that involves neck movements. I have
loss of sexual sensations, bowel motility problems, re-occurant bladder
infections, contractures in my rt. foot and rt. arm. Alot of sensory
sensations, like water running down my legs, tinglings, numbness down
the rt side of my jaw, visual blurriness, depth perception, falling/lack
of balance, and the list goes on, and on.
So in my case I only have 1 lesion, but whatever is causing an increase
in symptoms and new ones to appear, and lack of remissions is all
happening because of that 1 lesion. If I get too stressed, too hot, too
cold, the flu, cold, allergies, etc. it ALL affects me and flares
everything up, and has added new stuff.
But, she won't call it MS because there is NO multiple of lesions. She
said TM was in the MS family.
So it sounds like to me that TM is caused by the same "virus" or
whatever as MS.
I wanted to share this because it really had me bugged to hear of
conflicting stories about TM and whether it progressed or not. I thought
how could I have TM because in my case WHATEVER it was has been
progressing.
Maybe this isn't every body's experience with their TM, but isn't it
possible that for some of us we do have a Chronic Progressive form of
it? Even in MS there are different levels of it.
Does this make sense to anyone? [I hope I explained it okay]
Smiles, Jackie