My story - TM In NC
SDaggett(AT)aol.com
Mon, 1 Mar 1999 21:48:14 EST
My name is Stella, friends call me Stellllllllaaaaaaa. I am a California
native, but moved to NC in '93. I am 35 and have two children. This is what
happened to me. On or about January 6 I caught a cold from my coworkers. I had
been out on vacation and when I returned to work the whole office had a cold
and I guess they did not want to leave me out. I stayed home from work on
January 6 & 7, which I almost never do, to take care of my cold. I went back
to work on the 8th. I felt that my cold was better, except that I noticed my
thighs were sore. I contributed the soreness to being on my feet to much and
ignored it. It became worse. On January 19 I really began to notice a
difference in me. It was suddenly difficult to walk up stairs, bend over,
kneel down, stand, sit on the floor and to get up after sitting on the floor.
I decided to phone my family doctor on January 21 as it was obvious I was
having difficulty walking. I was told that the PA could see me and took the
appointment. The PA looked me up one side and the other. She could not figure
out what was wrong and asked the doc to see me. He could not figure out what
was wrong and told me that he would set an appointment for me to see a
neurologist in a week, but if I became worse to call him. I went home, made
dinner, and went to bed. The morning of the 22nd I went to work as usual and
felt fine. However, I was dribbling urine?! I made it to work and took care of
a few things (yes, I was in denial) then phoned my doc. I told him about the
dribbling and about it becoming more and more difficult to walk. He told me to
get to his office ASAP. I did. This time he checked me up one side and the
other and told me that he did not know what was wrong and that he was setting
an appointment for me to see a neurologist that afternoon. The neurologist
watched me walk, asked me if I had the flu recently and tested my reflexes. He
told me right there and then that I had TM, but I needed to have a series of
MRI's done so that he could rule out MS, Gillian Barrea (spelling?). He did
order a myelogram that afternoon and it was negative! He then told me that I
was going to be admitted to the hospital that evening, I needed to go home,
gather my things, and meet him at the hospital within the hour. I knew I was
dreaming. After all I had always been healthy and the only reason I had ever
had to be hospitalized was to have my babies! No sooner than I had my pj's on
the Steroid therapy began. I hate needles! Saturday morning I was unable to
lift my left leg and my right leg was catching up. I went for my MRI's (brain
and spine) first thing in the morning. They both were negative! What a relief.
When my neuro came to see me Saturday he told me that he wanted me to begin
plasma pheresis Monday morning and that he was increasing the amount of
Steroids. Sunday was worse than Saturday, not to mention the pain in my back
from the Myelogram...Ouch! On Monday I had a central line put in on my right
clavicle then off to the dialysis unit for the pheresis. For those of you who
do not know what pheresis is, there are 2 lines in you 1 for the bad blood and
the other for the good. They take the plasma out of line 1 and put in good
stuff in line 2. I had this done for 3 days. On the 3rd day my body reacted I
was so sick; weak, nauseated, dizzy, light headed, and pale as a ghost. My
nephrologist decided that I should have the pheresis every other day instead
of every day...smart man. During this time I was also given injections of
Vitamin K every other day after the pheresis. By Wednesday I was able to move
my toes on my left foot and I could lift my foot about an inch off the
bed....Hurrah! I continued the pheresis and continued to get stronger. I had a
total of 6 treatments before I was transferred to rehab. I spent 8 days there
and had great PT. I finally made it home after spending 11 days in the
hospital and 8 days in rehab. I came home with a wheelchair and a straight
cane. I use the wheelchair for long distances..can't walk the mall and use the
cane around the later part of the day. After spending one week home from the
hospital I went back to work p/t. I started back f/t the next week. This is my
3rd week back to work. I, like most of you, have a problem with fatigue. My
legs and hips seem to get stronger every day. I can't run and I can't hop, but
I can walk. I have had some problems with allergies. I had an allergic
reaction to the Vitamin K I was given and hives from some
medicine...dermatologist can't be sure which med. I long for the days of
yesterday when I was able to do 50+ things at once and go 150 mph. Now I am
lucky if I can get through work and dinner. TM has changed my life and me. My
family is trying to cope with it all and they, along with my friends, and
coworkers, have been very supportive. But still, I miss the old me and look
forward to the day I can walk up stairs like I used to, drive, and shop till I
drop and not literally drop! I certainly would like to know if anyone had
plasma pheresis. I've read a number of stories and did not see it mentioned.
Take care all and I look forward to hearing from you.
A fellow TM in NC,
Stellllllllaaaaaaaaa