Hi Marti,
I signed up here a month or so ago to read up on what is going on with other's out there with TM. My brother was diagnosed with TM (Dr's still are not 100%) positive. He was at the Cleveland Clinic and I can tell you "DON'T waste your time even calling there." Trust me, they were clueless. I did a massive amount of research and came across articles and documents from Drs that specialize in this condition. I printed and gave them to the Drs at the Cleveland Clinic to read. Of course they were a bit taken back but they weren't doing anything and kept telling us "We don't know!". I explained to them that I knew they were excellent Nuerologists there but that they do not specialize in TM therefore my family & I begged for more than 2 months for them to consult other Drs around the world. I begged a Nuerologist here who was seeing my brother to call the Physician to Physician at John Hopkins Myelitis Center.his response was "Why.I can't because I'm not the dr. following him now!" He said this while myself and my brother were sitting in HIS medical exam room. I responded with "If your not following him, then why are YOU seeing him?". My conclusion was that he just didn't care enough. The problem at the Cleveland Clinic (and we've experienced A LOT of the Cleveland Clinic since Oct 2004) is they rotate Drs every 2-4 weeks. There is no consistency in care. My brother would finally get a DR who really understood his case and wanted to do several specific tests on him.then a day later the new Dr is on.doesn't read the entire chart thoroughly.my brother has to tell him his 2-1/2 year 'brief' again and then that Dr tells my brother."I don't see anything in your chart about tests that are to be ordered.I seriously believe my brother did get much worse in a 1-1/2 week period. Drs finally ruled out infection & were able to give my brother steroids. I was there when 2 Drs said they were starting him on steroids. I told my family what the plan was since they knew for a FACT that the steroids could only help with the inflammation in his spinal cord. Because of this constant rotation of Drs.the steroids did not actually get ordered and started for 1-1/2 weeks. In that period of time my brother's paralysis moved above his waist and up high on his chest. He no longer had strength even in his hands after just 1-1/2 weeks. He could not even feed himself until recently. He was SO weak he could not even press the Nurse Call Button if he needed help. My family and I stayed 24/7 with my brother because we could not chance anymore 'errors' on their part. It's such a long complicated story & my brother's case is very rare & unique because he started out with Leukemia. I'll tell his story in another message but..Marti finally, my brother is at Metro Health Medical Center in their Spinal Cord Injury Unit. They are EXCELLENT! They do therapy with him 3 hours a day, sometimes more if he can stand it. The nurses there understand his special needs and feed him if one of us isn't there. THAT is the only thing that has seriously helped my brother to regain his strength and the use of his hands and a Strict Nutritional Supplement Program. We don't know if he'll walk again at this point or get the use of his bowel movements because Drs at the Cleveland Clinic ignored us telling them for 2 months that he couldn't move his legs at all or even wiggle his toes.before they even called a Nuerologist in to examine him. By the time they did anything.my brother lost the sensation of ANYTHING above his waist up to his breast area. He also had complete muscle atrophy after just a few weeks. Most likely caused by the lack of nutrition and after effects of his latest chemo treatment. Thank God.we were exercising his feet and legs all that time or his feet would be all locked up in a sideway and downward position and he would need a lot of therapy just to loosen those muscles up. My point to you is I would contact the John Hopkins Myelitis Center. Get copies of ALL your records, MRI's etc. That is what we have done. Ask your Dr and hopefully he'll be more receptive to calling the Physician to Physician Hotline. It is there specifically for drs around the world to consult with their specialists when they come across a TM case. If your Dr does not want to make the call.send your records to the John Hopkins Center and arrange to go their for a consultation. We don't have a choice but the Physician to Physician Hotline because my brother is not mobile.I live in Cleveland and he would have to be transported their via Ambulance.we'd have to live in a hotel but would still need Ambulatory Services to get him to & from the hotel. I hope this information helps in some small way.my brother IS getting sensations and feelings back in areas he did not have feeling in a month ago after just a few weeks of intensive Physical & Occupational Therapy. Renee _____ From: Todd Tarno [mailto:[EMAIL PROTECTED] Sent: Monday, February 05, 2007 2:14 PM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] questions re: tm 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 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
