Hi Michelle, You say that your daughter lost her eyesight? It sounds more like she has ADEM, or NMO rather than TM, which is similar, but can affect the eyes as well. Has anyone looked into that? I hope that you are able to get some answers. Best wishes, Marieke (TM @ T1 since March 2004)
Date: Mon, 21 Jan 2008 02:07:53 -0800 From: [EMAIL PROTECTED] Subject: tmic-digest Digest V2008 #23 To: [EMAIL PROTECTED] --Forwarded Message Attachment-- tmic-digest Digest Volume 2008 : Issue 23 Today's Topics: Re: [TMIC] Re: [Transverse Myelitis [ sal r <[EMAIL PROTECTED]> ] [TMIC] Re. Subscribe [ Kenneth Oliver <[EMAIL PROTECTED] ] RE: [TMIC] Re. Subscribe [ Larry Throne <[EMAIL PROTECTED]> ] [TMIC] Re. The Thought for Jan. 20, [ Kenneth Oliver <[EMAIL PROTECTED] ] --Forwarded Message Attachment-- Date: Sat, 19 Jan 2008 16:29:54 -0800 From: [EMAIL PROTECTED] To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] Re: [Transverse Myelitis Support] New to list - HELP Please Tampa Jacksonville 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: 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 MembersVisit 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. --Forwarded Message Attachment-- Date: Sun, 20 Jan 2008 17:32:17 -0700 From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Re. Subscribe Subscribe --Forwarded Message Attachment-- Date: Sun, 20 Jan 2008 20:41:52 -0600 From: [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: RE: [TMIC] Re. Subscribe Hey Ken, welcome back, longtime no talkie. Hope your doing well. How's Texas? Larry in Oklahoma who is cold and windy From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Date: Sun, 20 Jan 2008 17:32:17 -0700 Subject: [TMIC] Re. Subscribe Subscribe --Forwarded Message Attachment-- Date: Sun, 20 Jan 2008 23:11:44 -0700 From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Re. The Thought for Jan. 20, 2008 Jesus precious Saviour, was homeless and often hungry. He had not a where to lay His head. He was wearied oft. Humanity is honored because Jesus assumed humanity to reveal to the world what humanity may become. He came to bring life and immortality to light, to to fill the commonplace, homeliest pursuits of life with brightness. Jesus is bending over us, searching into our characters to see if His own character is reflected in us. That I May Know Him P. 47 _________________________________________________________________
