hi michelle here is a website you can go to and get more information about a
experimental therapy going on in Florida.
http://locomotor.phhp.ufl.edu/contactus.htm
CANDIS KALLEY <[EMAIL PROTECTED]> wrote:
body { font-family: 'Times New Roman'; font-size: 12pt; color: #000000}
Michelle,
I am so sorry you are having so much trouble finding a neuro. Most doctors
and neuros don't even know about TM or any of the related diseases.
What if you called John Hopkins - Pediatric Neurology: 410.955.4259
Adult & Pediatric Neurosurgery: 410.955.6406
Maybe they can refer you to a neuro in your area or close by.
I'm confused. Are you in Chicago? I believe that several people on the
support website live in the Chicago area. Maybe they can refer you to their
neuro.
OR are you in Gainsville? I would give you the name of my neuro - who knew
about TM but only knew about it but not very knowledgable on TM 2 years ago,
but thats almost 400 miles from Gainsville, but if all else fails, write me and
I will give you the info.
I would think that the university up thin Gainsville would have someone
knowledgable on neuro disorders or at least curious about it. Sounds as if you
have some of the doctors that fall in the range of "not knowing and don't have
the time to dig or don't care to dig into what could be". I do know that we
have several in our group from the Tampa and Jacksonville area. Maybe they will
answer and give you their neuro's info.
I wish that I could find the original website that I had 2 years ago and 2
computers ago. But I did find the NINDS website:
http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm
which states that the spinal fluid "contains more protein than usual and an
increased number of leukocytes (white blood cells), indicating possible
infection".
I wish that I could be of more help. If I can, or you think I can, please
let me know.
Prayers and thoughts for you and yours,
Candy K.
----- Original Message -----
From: "Michelle B" <[EMAIL PROTECTED]>
To: [EMAIL PROTECTED]
Sent: Saturday, January 19, 2008 3:42:26 PM (GMT-0600) America/Chicago
Subject: Re: [Transverse Myelitis Support] New to list
Candy,
We have been to so many Neurologists and they all just send her away with a
follow up appt in hopes she'll get better on her own and with therapy. I get so
frustrated because no one knows what happened or they say it is
psychological...I know there is something wrong and get no help so I have been
researching a lot. It is hard to find a Pediatric Neurologist in this area that
will take the time.
What exactly is found in the Spinal Tap fluid? She has had one done. I have a
large 3 inch binder full of all of her medical records.
In October she was fitted for HKAFO leg braces that go from her waist to her
toes and assist her in standing but due to her not being able to have the
strength or stamina she doesn't get upright much, if she does we worry about
her passing out sometimes.
Michelle
Check out her website...www.caringbridge.org/visit/brittanybarrett
CANDIS KALLEY <[EMAIL PROTECTED]> wrote:
Michelle,
I am so sorry to hear about your daughter.
Has your daughter had a Spinal Tap? There is a protein in the fluid that points
to TM. It took 3 MRI's to find my leisons and then it wasn't even the Neurogist
that found the leisons but the MRI tech. Then it was in for another MRI
without/with contrast.
Dr. Kerr at John Hopkins is the leader in the field of TM. My neuro consulted
with Dr.'s at John Hopkins but only after my insistance. Has your daughter's
neuro done the same? The John Hopkins website has a direct line for doctors for
consulations.
I waited 5 or 6 days for a diagnosis while given every test known was ran.
Other than TM, I'm in good health and I know alot of what I don't have.
Hopefully, your daughter's doctor(s) have done the same.
I did have a relaspe 3 days after being released from a 26 day hospital stay -
the relaspe left me as a quad. After 3 days, I had Plasma Exchanges (PLEX) and
within 24 hours started being able to open my hands from a fetal position. I
had a total of 7 PLEX treatments in the hospital with an additional 4 on an
outpatient status.
After each PLEX treatment, I gained more physcial ability. I now walk like a
drunk, but I am up and walking. In the house I use the walls and furniture for
balance. Out and about, I use a cane, 4 wheel walker, or my scooter for longer
distances.
Hopefully, you can find a Dr. that knows or is willing to investigate what is
your daughter's problem.
Prayers and thoughts for you and yours,
Candy K.
----- Original Message -----
From: "chellebear5" <[EMAIL PROTECTED]>
To: [EMAIL PROTECTED]
Sent: Saturday, January 19, 2008 1:16:12 PM (GMT-0600) America/Chicago
Subject: [Transverse Myelitis Support] New to list
Hello,
I am new to this list. I have a sixteen year old daughter that
passed out in June 2007 and has been paralyzed ever since. She has
major lower back pain, can't move or feel from her mid thigh down,
she gets headaches, lost her eyesight (it is slowly coming back),
can't feel her bladder when it is full, and so much more. She
couldn't move from her neck down when it first happened but within a
few days she was able to move her upper body (very weakly). She was
in ICU for 12 days, been back and forth to 22 specialists, been to
All Children's Hospital an hour and a half away, been to Mayo Clinic
in MN and still no diagnosis. She has passed out several times since
June. The scariest was two weeks before Xmas when she passed out and
stopped breathing. The EMT couldn't get her to breath on her own or
respond for 45 minutes. She was a perfectly healthy girl, never been
sick, track runner and head cheerleader. Now she is paralyzed and no
one knows why. At first they thought MS but there were no lessions on
her spine or brain MRI's. She gets an MRI every other month. The
Pediatric Neurologist in Mayo said she doesn't "feel" that my
daugther has Transverse Myelitis but after reading everything it
sounds exactly what happened to her. I have been researching a lot
since I just found out about this disease/disorder a week ago and
found the Johns Hopkins Hospital and University of Miami that have
centers that specialize in this disease/disorder. She attends 9
therapies a week (Physical Therapy, Occupational Therapy, and
Aquatics Therapy). Can anyone please give me any information, any
doctors who may specialize in this, or maybe give me some direction.
Any assistance is appreciated.
Thanks,
Michelle
www.caringbridge.org/visit/brittanybarrett
[Non-text portions of this message have been removed]
---------------------------------
Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
[Non-text portions of this message have been removed]
__._,_.___ Messages in this topic (4) Reply (via web post) | Start a new
topic
Messages | Files | Photos | Links | Database | Polls | Members | Calendar
MARKETPLACE
---------------------------------
Earn your degree in as few as 2 years - Advance your career with an AS, BS,
MS degree - College-Finder.net.
Change settings via the Web (Yahoo! ID required)
Change settings via email: Switch delivery to Daily Digest | Switch format to
Traditional
Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe
Recent Activity
6
New Members
Visit Your Group
Yahoo! Health
Looking for Love?
Find relationship
advice and answers.
Sell Online
Start selling with
our award-winning
e-commerce tools.
Autos Group
on Yahoo! Groups
Discuss ways to
fix your car.
.
__,_._,___
---------------------------------
Never miss a thing. Make Yahoo your homepage.
