Hi Renee,
Thank you for staying on top of your brother's care. It could had taken his
life. By the time I knew I had TM, it was a year later, it was too late for
streiods for me. My TM never got higher than my waist, thank God for that.
Our prays are with your brother & your family,
Todd in CC, TX / TM since April 1, 2002 T-4 to T-8
Renee Moore <[EMAIL PROTECTED]> wrote:
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st1\:*{behavior:url(#default#ieooui) } Hi Marti,
I signed up here a month or so ago to read up on what is going on with
others out there with TM. My brother was diagnosed with TM (Drs still are
not 100%) positive. He was at the Cleveland Clinic and I can tell you DONT
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
werent doing anything and kept telling us We dont 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 cant because Im 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 didnt care enough.
The problem at the Cleveland Clinic (and weve 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
doesnt 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 dont 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 brothers 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. Its such a long complicated story & my brothers case
is very rare & unique because he started out with Leukemia. Ill 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 isnt 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 dont know if hell 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 couldnt 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, MRIs etc. That is what we have done. Ask your Dr
and hopefully hell 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 dont 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
wed 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]; [email protected]
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 [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
