My husband was diagnosed with TM late in March, 1997. It
was progressive onset over a two week period and he had
numbness from his waist down, couldn't pee, but he was
always able to walk, although not very steadily.
He was given steroids IV for four days and was then released
with steroid to take at home. By the time he was released
from the hospital, his pain was mostly gone although he still
had his other problems.
He was on steroids for 3 more weeks before the Drs. decided
it was time to wean him off. I don't know if any of you have
had a adverse reaction to steroids, but my husband certainly
did. He became manic, running around a million miles a
minute, his heart rate was up to 120/min. and he was unable
to sleep for four days. He was readmitted to the hospital for 5
days at which time his lungs started to bleed.
Well his doctor, eluding to the fact that his problem wasn't
because of the steroids, wanted to put him on some drugs for
manic depression (I forget the name, but it's used instead if
Lithium). We felt that his reaction was a result of the steroids
in the first place and it would be best to get him off of
everything. To make a long story short, it took a little while,
but he back to normal with no drugs. I think the Dr. was just
trying to cover his butt because he was on steroids too long
in the first place.
As far as his physical problems, he self-cathed for a couple of
weeks but he gradually was able to go enough on his own to
stop using the catheter. He still has to go often and has to
watch his bowel functions, but he has improved dramatically.
He now has more bladder control although his stream has
taken a step back which I'm a little concerned about.
Slowly his numbness started to dissipate to the point that
only his shins and feet are numb. He gets a lot of feet
twitching at night and has l'hermitt's syndrome but I would
say he's back to 90%.
By reading your emails daily, I realize how lucky my husband
is. We both have the attitude that we aren't cursed because
this thing got him, but fortunate because of all the
improvement he's made. We don't look at the way things
were, we concentrate on today and the future. If he doesn't
make any more improvement from this day on, we can live
with that.
Just one more thought - I think the way he may of gotten this
was from a live virus my daughter was given as a vaccine.
She had MMR (measles, mumps, rubella) shot 5 days before
my husband's first symptoms appeared. I mentioned this to
his new doctor, and she said that was very interesting.
Good luck to you all.
Diane
>>> Deborah Capen <dcapen(AT)ivic.net> 05/17/97 01:05pm
>>>
Hi group,
I was just sitting here this Saturday Morning, (as many of us
probably do) going through my old TM letters. I used to print
them as they came in, until the folder got too thick. Then I
got smart, and created a folder in my computer to save them.
I just can't figure out how to get them from my computer to a
disk. It just doesn't work the same when you open the
internet folder, as a regular file in a regular program.
Anyway, that is not what I was writing about. I was just
curious about the progress of a few people on the list that we
hadn't heard from lately. Maybe if you are still on the list, we
could hear from you. If we don't hear from you, I will
personally e-mail each of you to see how you are doing.(Is
that a "threat"?)
First is John Kimball, who had the two-year-old son Matthew
who was struck with TM. How is Matthew doing? I hope he
is becoming a normal "Terrible
Twos" child.
Then there is Thomas and Renee Feldman with the 11-year
old daughter. She was struck around Thanksgiving. I believe
that she was doing well with almost 100% improvement, last
we heard. Is she still doing well?
Anybody else who is still on the list, who is experiencing
excellent recovery, I am sure that all of us would like to hear
from you. The ones that are going through "down" times
could use the good news to bring up our spirits.
Thank you.
Debbie dcapen(AT)ivic.net