Marti, I'm sorry for all that you have been thru. TM hits us all differently but we all understand the incredible pain!! I think you would feel much better about the diagnosis if you went and got another opinion. Johns Hopkins is a great place to go.. and many of us went there for our second opinions. Dr. Kerr is the best if you can get an appointment with him.
With four kids it's got to be incredibly hard. stress is of course not good for TM. The fact that your husband and family members really cannot understand what you're going thru makes it even worse.. Cause you "look" just fine! Some of us are in wheelchairs or use walkers (me) or canes. Some are fortunate enough to be completely back on their feet. We are here for you!! Ask any questions you want. even if it's just to "vent" as many of us have done. Try to take it one day at a time, exercise if you can, do yoga or something that will help with the stress. Tho I raised four children and unless you lock yourself in the bathroom.. there is no time for "you".. I was 55 when TM hit and my kids came home and took care of me till I could get back on my feet. Take care... keep in touch with us. Trudy _____ From: by way of Jim Lubin <[EMAIL PROTECTED]> [mailto:[EMAIL PROTECTED] Sent: Thursday, January 25, 2007 1:42 PM To: tmic-list@eskimo.com Subject: [TMIC] questions re: tm 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
