I AM FAIRLY NEW TO THIS EMAIL CHAT. I AM A 36 YEAR OLD WIFE AND
MOTHER WHO WAS DIAGNOSED WITH INCOMPLETE TRANSVERSE MYELITIS. IT
SEEMS TO HAVE BEEN A "FAIRLY MILD" CASE COMPARED TO A LOT OF THE
STORIES I HAVE READ SO I WAS REALLY HESITANT TO WRITE. BUT I HAVE SO
MANY QUESTIONS THAT I CAN'T SEEM TO GET ANSWERED. IT HAS BEEN A
ROLLER COASTER AND I'M AT A FRUSTRATING POINT AGAIN. I FEEL STUCK
AND I NEED SOME INPUT. I WILL TRY TO BE BRIEF WITH MY HISTORY AND
THEN ASK THE QUESTIONS. IN MARCH TM HIT ME WHILE WATCHING TV I FIRST
THOUGHT MY LEG WAS ASLEEP AS A RUNNER IT WAS NOT UNUSUAL TO HAVE SOME
WEIRD ACHES AND PAINS IN MY LEGS FROM TIME TO TIME. I STOOD UP BUT
IT WOULD NOT GO AWAY SHORTLY AFTER I TOUCHED MY SIDE WITH MY HANDS
AND IT WAS VERY PAINFUL. OVER THE NEXT TWO WEEKS IT CAME ON MORE AND
MORE WITH WEAKNESS STUMBLING (ON BOTH SIDES) FREQUENT AND URGENT
URINATION WITH A FEW ACCIDENTS AND BOWEL LEAKAGE. AFTER TRYING SMALL
DOSES OF STEROIDS THINKING MAYBE IT WAS SHINGLES(I WORK IN A FAMILY
PRACTICE OFFICE). I WAS FINALLY REFERRED TO A BACK DOCTOR WHO MY
HUSBAND KNEW. HE WAS CONCERNED WITH THE NUMBNESS IN MY LOW BACK ( I
COULDN'T FEEL PIN PRICKS ON MY LEFT SIDE) HE DID SEVERAL MRI'S AND
IN TWO DAYS I WAS SEEING A NEUROLOGIST. HE DIAGNOSED ME WITH TM AND
STARTED ME ON HIGH DOSES OF SOLUMEDROL AND URISPAS FOR MY BLADDER
THEY HAD REPORTED SPOTS ON MY BRAIN AND INFLAMMATION IN MY CERVICAL
SPINAL CORD. BY AUGUST I WAS FEELING MUCH BETTER MY URINARY AND
BOWEL FUNCTION WERE MUCH IMPROVED AND MY MRI'S WERE CLEARED I THOUGHT
I WAS "HOME FREE" THEN IN OCTOBER THE NUMBNESS SENSITIVITY TO COLD
EXTREME FATIGUE AND PAIN AND BURNING SENSATION RETURNED:( I JUST
CAN'T SEEM TO BEAT IT AROUND NOVEMBER THEY DID MORE MRI AND SAID THE
INFLAMMATION WAS STILL GONE BUT HE SAW THE SPOTS ON MY BRAIN AGAIN
BUT WAS N'T CONCERNED WITH THEM SINCE I DIDN'T HAVE THE SPINAL CORD
INFLAMMATION AGAIN. HE(MY NEUROLOGIST) PUT ME ON NEURONTIN 200MG QHS
AND CYMBALTA 30MG AM. I FORGOT TO MENTION I HAVE A REALLY HARD TIME
WITH MEDS IN GENERAL I REACT VERY STRONGLY TO JUST ABOUT ANYTHING
WHEN I WENT UP TO NEURONTIN 300 AT NIGHT I WAS OUT OF IT THE WHOLE
NEXT DAY AND THAT IS IMPOSSIBLE WITH FOUR LITTLE ONES. IN THE LAST
WEEKS IT HAS JUST GOTTEN WORSE I TAKE DARVOCET WHEN I CAN'T STAND THE
PAIN ANY MORE BUT THAT JUST SENDS ME TO BED.
MY QUESTIONS ARE IS THIS THE BEST THAT TM CAN BE CONTROLLED IS THIS
SOMETHING I WILL JUST HAVE TO LEARN TO DEAL WITH. I'M HAVING A
REALLY HARD TIME ACCEPTING THIS AS THE QUALITY OF MY LIFE BUT I DON'T
KNOW WHAT ELSE TO DO. I AM WONDERING ABOUT JOHN HOPKINS TM CENTER OR
IF ANYONE KNOWS ANY AT CLEVELAND CLINIC OR CLOSE TO DETROIT MICHIGAN
THAT SPECIALIZES IN THIS. I HAVE A GREAT NEUROLOGIST BUT I THINK I
NEED SOMEONE THAT SPECIALIZED IN TM. I HAVE A SUPPORTIVE HUSBAND AND
EXTENDED FAMILY BUT EVEN THEY JUST DON'T UNDERSTAND. I HAVE A FRIEND
THAT KEEPS INSINUATING THAT I NEED TO JUST GET OFF OF THE MEDICINE
SHE THINKS THE MEDICINE IS THE PROBLEM. BUT I CAN'T IMAGINE THE PAIN
WITHOUT THE LITTLE BIT OF MEDS I AM ON. I KEEP SAYING I'M NOT
DEPRESSED BUT IF THIS CONTINUE'S WITHOUT ANSWERS I SUPPOSE I WILL
BE. I AM DEFINITELY DISCOURAGED. SORRY FOR THE LONG EMAIL IF ANY
ONE HAS SUGGESTIONS OR ENCOURAGEMENT I WELCOME IT
THANKS MARTI
-------------- Original message --------------
From: Jim Lubin <[EMAIL PROTECTED]>
Hi Marti,
To send to the entire group, send the message to tmic-list@eskimo.com
Jim
At 05:44 PM 1/19/2007, [EMAIL PROTECTED] wrote:
JIM
I WAS DIAGNOSED WITH TM MARCH 07. I AM NEW TO THIS EMAIL
CHAT. I'M NOT SURE HOW IT WORKS. I HAVE LOTS OF QUESTIONS BUT I AM
GOING TO SEND THIS TO YOU TO SEE IF THIS WORKS BEFORE I WRITE OUT MY
QUESTIONS AND THEY DON'T MAKE SINCE I HAVE DONE THAT SEVERAL TIMES. THANKS
MARTI
