Re: New to the system
JJ (cathe(AT)pl.jaring.my)
Wed, 3 Sep 1997 22:28:13 +0800 (MYT)
At 12:38 PM 8/30/97 -0400, you wrote:
>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
>
>
>Dear Jan,
My brother was diagnosed almost similar to your case in Dec 26, 1995 at the
age of 32, but as you can see the medical facilities here in Sarawak,
Malaysia are very poor ang to see a neurologist, he has to wait for about 4
months as the waiting list is simply too long and that the neurologist have
to fly in from Peninsula Malaysia.
You mentioned about steroids, can you please recommend the type of the
steroids that you took.
Thank you and hope to hear from you soon.
Regards,
Jaithish
Sarawak State
Malaysian Borneo