Re: New to the system
FHargr3092(AT)aol.com
Sat, 30 Aug 1997 12:38:23 -0400 (EDT)
Finding information concerning Transverse Myelitis is the best thing that's
happened!
I'm of two feelings--1)sorry any one has to have this disease, 2)glad to know
that some one knows what I'm talking about when I tell them what's going on
with my body! I was diagnosed with TM on April 29, 1996. I had had
pneumonia for 3 wks in April started medicine on March 30 and finished April
18 and was beginning to get my strength back when the lower back-aches and
pains hit me on Apil 25. I was eight hours from home when I realized that my
bladder was not functioning. My husband drove us home in seven hours and
took me to the ER. ER dr could not find anything but low grade temp and no
function so after consulting my internal med. and urologist drs I was given a
catheter and sent home. Sometime Sunday I lost the use of my legs and on
Monday morning my Dr ordered me to hosp asap! By noon the internal med,
urologist, and neurologist had narrowed the diagnosis to TM or
Guillian-barre. After second MRI I was started on 1000 units steroid by IV
and by morning of April 30 I could feel pain in my toes so knew I was on the
way back! I spent 4 days in hosp then 6 days in Skilled Nursing unit (SNIF)
with home care for following 6 weeks. In that time I went from wheelchair to
walker to cane. I could walk unassisted by August but my gait has never
returned to normal and I am always nervous in crowds for fear I would be
knocked off guard and fall. I've enjoyed reading summaries and share many
similar complaints, i.e. pain in lower back, no temperature control--my legs
are always cold on outside and burning on inside, I've had shingles since
this first hit-my dermatologist said this was the best case of shingles she'd
ever seen cause I couldn't feel the pain associated with it!-I also still do
not have normal use of my bladder/bowels but I no longer have to self-cath so
progress is being made. My urologist explained that to date my control
center in that area is still operating only one way but that's better than
before. He told me that the bladder/bowels are first to go and last to
return...I continue to believe that I have been very lucky and that I can
continue to improve---I never thought that I wouldn't come back and forward
is the only way to look! Also, everybody in the hospital said that our
positive additive and the fact that we (husband and family) laughed at (and
with) all that happened was the best medicine possible. Someone mentioned
the tight band around the middle-I had that (told dr that the BRA GOD was
punishing me because I hate bras) but it has eased and I no longer feel as if
I have on a too small bra. I must also state that the massive steriods
brought on diabetes and I had to diet and watch blood sugars for 6 weeks
after I got home but that is on gone and I've gained two times what I lost!
Fatigue still dogs me-I was glad to read where someone said that their dr
ordered 12 hours sleep/nite. I don't sleep that long but I do have to go to
bed earlier and sleep later than I ever have before. I guess I never said
that I was affected to T8 so never had to be put on respirator. I've
rambled too long but thought I would tell you some of my thoughts. I keep
thinking of other things--I also had double vision for 2 weeks but that has
cleared and opthamologist says my eyes have not changed since prior to onset
of TM/acute encephalomyelitis. I do find that my train of thought and powers
of concentration are not as they used to be (you can tell by the way I've
rambled) but I'm trying---
Jan Hargrove