Hi Marti,
You are on very low dose of meds. I was up to 3,600 mg of Neurontin for a
year and then slowly went down to 1,800 mg ( 600 mg 3 times a day). I'm now on
Lyrica 75 mg twice a day.
I slowly got worst the first two years. I was unable to exercise, because of
fatigue. But once I was able to do little exercise, I started to see
improvements. Some doctors say the only improvements you will every get is in
the first two years and that is all. But I'm getting stronger each day, it may
be small, but it is improvements.
You will need to use the meds that are good for you and do the exercises that
are good for you. Do either too much and you may pay for it the next day in
bed. That is OK, too.
Our prays are with you & your family,
Todd in Corpus Christi, TX
"by way of Jim Lubin <[EMAIL PROTECTED]>" <[EMAIL PROTECTED]> wrote:
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 [email protected]
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
