Re: any similar case

Lori Gasik (lgasik(AT)kiwi.dep.anl.gov)
Tue, 16 Sep 1997 15:42:58 -0500

>** Reply Requested When Convenient **
>My daughter was diagnosed with Transverse Myelitis on 6/9/97 at the
>age of 6. She is now 7. She was paralyzed right below her chest but it
>has moved down to T9 and has stayed there. Her prognosis is that she
>will be paralyzed for life because of the rapid onset of the myelitis. She
>has a lot of tone in both legs which causes spastic jerks and tightness in
>her legs. She is currently on Baclofen and Valium for this. She does
>self-cathing but about a month ago she started becoming incontinent
>between cathing. About two weeks ago she started to tell me that she
>had to urinate and actually did. She saw the Urologist and he has
>scheduled a test called a CMG for this Thursday. I would like to hear
>from someone who has been through this.

MY CASE WAS ALMOST EXACTLY THE SAME AS HERS MY MYELITIS CAME ON OVER A DAY
AND JUST LIKE HER MY PARALYSIS WENT FROM T4 TO T6 AND I AM NOW ABLE TO TELL
WHEN I HAVE TO GO I'VE BEEN ABLE TO TELL FOR A WHILE NOW AND I DON'T HAVE
TO CATH AT ALL MY ONLY PROBLEMS ARE AT NIGHT WHEN I'M SLEEPING OTHER WISE I
ALWAYS NOW WHEN I GOTTA GO AND I GO BUT I HAVE TO TAP MY BLADDER TO GET IT
ALL OUT AND AT NIGHT I USE A CONDOM CATHETER. AND LET ME TELL YOU GUYS
SOMETHING JUST BECAUSE A DOCTOR SAYS THAT DOESN'T MEAN ANYTHING THEY JUST
DO THAT TO SAVE THEIR BUTTS. AND WHAT KEEPS ME GOING ON IS KNOWING THAT
THEIR WILL SOON BE A CURE AND THATS THE DEAD TRUTH AND IT WILL BE SOON. I
HAVE DONE ALOT OF RESEARCH IN SPINAL CORD REGENERATION AND I KNOW ALOT
ABOUT WHAT THEIR DOING HOW FAR THEY ARE AND THEY BELIEVE THAT WITHIN 5-7
YEARS THEY WILL HAVE AN EFFECTIVE THERAPY WE'LL ALL WALK AGAIN AND I'M NOT
JUST SAYING THAT BECAUSE I'M IN DENILE BUT BECAUSE ITS DEFINATELY TRUE BUT
UNTILL THEN KEEP YOUR LITTLE GIRL IN SHAPE WITH ALOT OF THERAPY AND F.E.S
WOULD BE GOOD FOR ATROPHY OF THE MUSCLES AND ALWAYS MAKE SURE SHE DOES
PRESSURE RELEVES EVERY 15 MINUTES FOR AT LEAST 15 SECONDS BECAUS PRESSURE
SORES ARE A BIG PROBLEM AND IF THEY GET TO BAD THEY MIGHT HAVE TO CHOP YOUR
LEGS OFF.

SORRY I WROTE SO LONG BUT I JUST WANT TO HELP YOU AND YOUR DAUGHTER OUT
SINCERELY BILL KENNEDY