I had really bad headaches 24/7 until I got on neurontin in the begining. Had
them again for 5 days when I stopped neurontin 1,800 mg daily ( down from 3,600
mg ) and started on Lyrica 300 mg daily cold turkey. My doctor told me I
wouldn't have any problems. I wouldn't do it that way again. I believe I
could have weenied off of one while starting the new medication, but I still
don't know how to do that. lol
--- On Sat, 3/13/10, Gary Thomas <gbthomas8...@sbcglobal.net> wrote:
From: Gary Thomas <gbthomas8...@sbcglobal.net>
Subject: Re: [TMIC] Re: Hope
To: "Pieter and Heather" <pieterheat...@shaw.ca>, "jrushton"
<jrush...@columbiaenergyllc.com>, "j ra" <rumc...@hotmail.com>, "tmic"
<tmic-list@eskimo.com>
Date: Saturday, March 13, 2010, 9:48 PM
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I wonder about this also. What surgery would help? Does a medical person not
familiar with TM think it is an ongoing inflammation continuing to do damage?
Not sure if I have heard of headaches as a result of TM, but spasms, yes, and,
of course bladder and bowel dysfunction due to TM. The girl could be helped by
thereapy but, again, what is the surgery for?
Gary
----- Original Message -----
From: Pieter and Heather
To: jrushton ; j ra ; tmic
Sent: Friday, March 12, 2010 7:24 PM
Subject: Re: [TMIC] Re: Hope
I have a question. In the write up it says this young girl needs surgery. I'm
wondering what type of surgery will help her. Also this statement doesn't make
sense to me from the article She said if her daughter’s condition remains
untreated paralysis could become permanent and in a few cases transverse
myelitis has been fatal, travelling to the upper body and paralysing the heart,
lungs and other vital organs.
I am wondering how it can now travel to the upper body and paralyze heart lungs
etc if the original damage is already done?
Am I reading this wrong?
Just wondering is all.
I'm sorry to hear of any child who has to join the ranks of us with TM.
Heather in Calgary
----- Original Message -----
From: jrushton
To: j ra ; tmic
Sent: Friday, March 12, 2010 3:16 PM
Subject: RE: [TMIC] Re: Hope
Do they have Shriner's or have they called them because they will always help
when it comes to a child. Also, St. Judes. Gosh, it would be wonderful if one
of them would come thru for her!! Jeanne in Dayton, WA
-------Original Message-------
From: j ra
Date: 3/12/2010 3:45:15 PM
To: jan...@centurytel.net; j.d...@shaw.ca; Transverse Myelytis
Subject: RE: [TMIC] Re: Hope
Hi everyone,
I have to ask a favour. This is a case that I'm personally getting involved
with and I need some help. It's a pediatric case and I need some advice as to
the best place for the child to receive care. Please read the article.
FULL STORY
Paralysed girl needs $1.9m for surgery
Julien Neaves jnea...@trinidadexpress.com
Monday, March 8th 2010
SERIOUS CONDITION: Christa Brumant at her home in Tunapuna last week. -Photo:
ANISTO ALVES
ON SEPTEMBER 19 last year then nine-year-old Christa Brumant awoke at about 6
a.m. with terrible abdominal pains and was taken to hospital. Five hours later
Christa was paralysed from the waist down.
’She said ’mummy I can’t walk’,’ her mother, Ramona Eligon, recalled.
Christa spent 47 days at Mt Hope Paediatric Hospital where doctors diagnosed
her with a condition called transverse myelitis, a rare neurological disorder
caused by inflammation of a segment of the spinal cord.
Her family is attempting to raise $1.9 million for medical treatment and
rehabilitative therapy at the Johns Hopkins Hospital and the Kennedy Krieger
Institute in Maryland, USA for May 4.
When the Express visited their Tunapuna home last week, Christa, now 10, was
sitting in the wheelchair that she has been confined to since September.
She was checking out a Barbie Girls website and later raised her hands in
triumph that she was a ’VIP’ on the site. She was not in any visible pain
during the interview.
Eligon said her daughter has no feeling from the waist down but suffers from
painful muscle spasms daily, at times so severe that she would stiffen and fall
off the chair.
Her other symptoms include daily headaches, back pain so severe that it keeps
her awake for hours, nausea and acute bladder and bowel dysfunction. Eligon is
extremely worried that her daughter is unable to defecate for days sometimes,
which could lead to a build-up of toxins and further complicate her medical
problems.
She said if her daughter’s condition remains untreated paralysis could become
permanent and in a few cases transverse myelitis has been fatal, travelling to
the upper body and paralysing the heart, lungs and other vital organs.
The family has been able to raise $35,000 so far and has applied for the Health
Ministry medical grant of US$10,000 for children requiring medical treatment
abroad. The Education Ministry has provided a personal aide to assist Christa
as she attends classes at Tunapuna Girls’ RC, and her mother noted she is an
’A’ pupil.
Eligon has had to take leave from her job as an administrative assistant to
help care for her daughter and was thankful for the support of her husband,
Evris. To help raise funds the family is hosting a cruise on March 26 aboard
the Treasure Queen and ’An Evening of Elegance’ on May 1. For more information
call 777-5080 or 395-5727.
’I really convinced that if everyone in the country opens their hearts and
makes a small contribution not only my daughter can be helped but others
needing assistance can be helped.’
As the Express left the home, Christa wheeled herself outside, smiled and
queenly waved good-bye.
From: jan...@centurytel.net
To: j.d...@shaw.ca; tmic-list@eskimo.com
Date: Thu, 11 Mar 2010 08:50:25 -0600
Subject: [TMIC] Re: Hope
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Love to hear that stuff!!!
Janice
From: Janet Dunn
Sent: Thursday, March 11, 2010 12:36 AM
To: 'Janice Nichols' ; 'tmic'
Subject: Hope
I did forget to mention something: my right leg/foot has been the afflicted
one. The one that I struggle to make move. The one that causes the pain. I
thought it would be forever.
One day as I was listening to the radio, I had an “aha” moment. A wonderful
catchy song was playing, and I looked down and saw that my foot was tapping in
time to the music. I had not been able to do that for a long time. I could
have cried. So – yes, never give up. The positive changes are sometimes such
a part of our life that we fail to recognize them for what they are.
Janet
From: Janice Nichols [mailto:jan...@centurytel.net]
Sent: March 10, 2010 7:28 PM
To: Janet Dunn; 'tmic'
Subject: Re: [TMIC] Lesions and Myelin Regeneration
"DITTO", Jan!!!
Janice
From: Janet Dunn
Sent: Wednesday, March 10, 2010 12:06 PM
To: 'tmic'
Subject: RE: [TMIC] Lesions and Myelin Regeneration
I think that the improvement happens. For everybody? Depends. I have found a
few improvements in areas, and some worsening in other areas. I take it one
day at a time, because as we all know, anything can and usually does happen.
But I drag my leg less now, and the intense banding eases up more readily. So
I remain ever hopeful. And it has been since July 2004 that I have been
afflicted.
Janet
From: Jan Hargrove [mailto:jmh1...@sbcglobal.net]
Sent: March 10, 2010 8:51 AM
To: lynne myers; tmic
Subject: Re: [TMIC] Lesions and Myelin Regeneration
I do not agree with the two year statement. My doctor never told me that
I wouldn't get well, nor give me a timeline. The only thing he said would
not return was my temperature control. He was right!! AND, I've had
improvements throughout the 14 years tm's been in my life........no matter
how small, improvement is improvement and gives hope for more to come!!
My 2¢ janh
From: lynne myers <lynnemye...@yahoo.com>
To: tmic <tmic-list@eskimo.com>
Sent: Wed, March 10, 2010 6:26:13 AM
Subject: [TMIC] Lesions and Myelin Regeneration
This is a quote from one of the message forum pages on TM website:
Even though the lesion(s) are gone, there may be underlying nerve damage caused
by the inflammation and the fact that the nerves were "unprotected" once the
myelin got "eaten" away. The myelin grows back at 1mm a day, so it takes a
while for the body to repair itself, BUT the nerve can remain damaged.
You will know what damage is left at the 2 yr mark. After this you can still
have some recovery but it is very small and unlikely to be very noticeable.
This information is provided by one of the site administrators who is also a
Registered Nurse.
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