Transverse Myelitis

[vickie]

I was diagnosed May 2004. I was feeling fine suddenly severe pain and
then paralized
from the waist down. I also lost bowel and bladder control. John
Hopkins is the hospital you want to contact they are the number one
research center, Dr. Douglas Kerr is the research head. Victory
Junction Camps are beginning to have sessions for kids with TM. The
first one in Randleman, NC this weekend (Nov 18-20).
I had to learn to walk again using a brace and a walker that beats
using a wheel chair.
I was in the hospital for two months with intense physical therapy and
another nine months of out patient therapy. The best therapy was I
started doing yoga within a week most of the back pain went away and
soon the skin pain left.
I am still doing exercise--yoga-weights-water low impact program(this
is a great program).This is a terrible disease and no one will know
exactly what it is like but you. You have to stay positive work harder
and always count your blessings.

[RedRose]

Did your myelitis just come on suddently? I had just had a Remicade
infusion and 12 hours later was in the hospital because I could not
walk or feel my legs from the waist down.

This was on May 3rd of this year, and I still cannot feel my left leg
or the perianal area. How do you deal with the depression? I'm trying
to get accepted into the Covington Pain Management program, seeing the
head of the group on Wednesday. Wish me luck.

[vickie]

The onset was very sudden, from the first indication of being sick to
paralysis was less than an hour. I was on my way home from a meeting, I
pulled over, called my husband to come and get me then I called 911, I
knew it was something very serious. The pain was very intense-nothing
would ease the pain-I was the type two aspirins made me sleep all
night. They gave me 2 shots of valium, demerol, morphine finally
dilauda (sp) eased me a little, this was within two hours.
I was in the hospital for two months and I had lots of time to think. I
thought of my friends and why it did not happen to them. Knowing their
personality and other things I knew they could not handle it. I
analized the whole situation and decide I guess God thought I was the
strongest to deal with this problem. I have times I feel very sorry
for myself then it is time to move on to something else.
I think if you will try yoga you will not need pain management. Talk
to the instructor and let her know you may be limited in movements and
ask if she would work with you. This has taken my pain away. I broke
my ankle and could not do yoga for three months and the pain came. When
the doctor let me on my foot again I was right back and the pain is
gone again.
Good Luck! Always Stay Positive!