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Undiagnosed - White matter disorders of unknown origin (UND)
Second Opinion Program
- By Halls · New reply November 10, 2009
- 5 replies
- We have recently finished all the testing we can do at this point on my 9 month old daughter, and I am considering doing the second opinion program through ULF. Does anyone have any experience with this ...
NIH survey of Parents of Undiagnosed Children
- By MLDdad · Posted October 29, 2009
- 0 replies
- The National Human Genome Research Institute at the National Institutes of Health (NIH) is sponsoring a study that seeks to learn more about how parents of children with an undiagnosed medical condition ...
Infant Leukodystrophy
- By Halls · New reply October 28, 2009
- 6 replies
- Hi everyone, My daughter is 6 months old and two weeks ago an MRI showed that she has the amount of myelin that a 2-3 month old would have. We don't know yet if it is demyelination or hypomyelination ...
What Next?
- By 2tired2think · New reply October 19, 2009
- 8 replies
- I need some advice on where to turn now. My son has been diagnosed with undiagnosed leukodystrophy. He has seen 4 neurologist now and has had many tests done. We just went back to his current neurologist ...
Adult-onset leukoencephalopathy or leukodystrophy
- By crblock · New reply October 9, 2009
- 13 replies
- I am a 65-year-old woman, living in Chicago, who has recently been diagnosed with leukoencephalopathy, of unknown origin. In January, 2008, I had the symptoms of a stroke, but stroke was ruled out. MS ...
Joining you
- By 2tired2think · New reply September 29, 2009
- 3 replies
- I am so relieved to have found this website. We have a 2 and a half year old son who has recently been diagnosed with undiagnosed leukodystrophy. I have so many questions and don't really know where to ...
Leukodystropy of unknow etiology
- By Lisa44 · New reply August 17, 2009
- 31 replies
- I was wondering how many other people are out there with a child who has a leukodystrophy of unknown etiology. I would love some feedback from those of you who do. My son was diagnosis about 7 years ago ...
FRUSTRATED!!!!!!!!!!!!!!!!!!!!!!!
- By myjoshiebaby · New reply August 12, 2009
- 16 replies
- For the past year I have seen a decline in my son's mobility. He went from a vibrant toddler to falling all over the place. Two weeks ago, the day after his 4th bday, he fell down the stairs and cut his ...
waiting 4 an answer
- By zoe4manaia-rain · New reply August 12, 2009
- 12 replies
- hi there,my daughter will be 2 in a few weeks and has been undergoing tests to try and find out which leuko disorder she has. the problem we have is that apart from her head tilt her wandering eyes and ...
any one else undiagnosed?
- By tallcrowe · New reply August 12, 2009
- 12 replies
- hi! my 6 year old son is undiagnosed with a possibility of 4h syndrome which is not even an officially named leukodystrophy yet. we have worked with cincinnati children's hospital medical center for about ...
Unusual Seizure Like Activity
- By CLuke · New reply July 31, 2009
- 1 reply
- My son just turned one year old. He was macrocephalic and very floppy at birth. His head continued to grow larger and hypotonia became very apparent. He still cannot hold up his head, but he is very alert ...
Need your help on symtoms
- By kristie777 · New reply July 27, 2009
- 7 replies
- I am writing for my sister who is beside herself in depression over what her body is doing to her. About 2 years ago Robin started seeing a neuro because of a brain mri because of extensive white matter ...
Undiagnosed Leukodystrophy
- By Hope4HaileyBug · New reply July 12, 2009
- 1 reply
- My youngest daughter, Hailey, was diagnosed with having Leukodystrophy in February of 2007, but to date as still gone undiagnosed to which one she has. She has been tested for 33 of the 34 different types ...
Undiagnosed Leukodystrophy Website
- By DarrenB · New reply June 29, 2009
- 20 replies
- Hi my name is Darren, We live in the Chicago area and have a 4yr old daughter Sarah. She was given the title of undiagnosed Leukodystrophy in November 2005. For those that have been to the ULF conferences ...
2 children with undianosed leukodystrophy
- By rheots25 · New reply April 30, 2009
- 11 replies
- I have two children a daughter who is 12 and a son who is 10 they have both beed diagnosed with an undiagnosed leukodustrophy. It's really fustrating sometimes I wonder if its a leukodystophy at all ...
progressive decline
- By paulm68 · New reply April 25, 2009
- 6 replies
- Answers, My son is 18 and each month or so it seems he loses more muscle control. this past year he went from a walker to wheel chair. his ypper body strength seems to be holding but we have noticed his ...
unidentified leukodystrophy cerebellar
- By Andy12 · New reply March 17, 2009
- 2 replies
- We have a 12 yearold son who started to slowly become clumsy in his walking ability around 6-7 years. At 9 1/2 years he was finally assessed by a neurologist , had a brain MRI which showed a white matter ...
New to This
- By Stwescapj020762 · New reply March 11, 2009
- 3 replies
- I was in a severe accident about 5 years ago hit my head and was taken by ambulance to the hospital. Ct scan then was showing signs of White Matter Disease. Just reciently fell and again landed ( this ...
UND
- By cubsportgal21 · New reply September 18, 2008
- 5 replies
- I have white matter disorder, and i keep going back into the hospital to take test to be fullen diagnosed with "metachromatic leukodystrophy or either leukodystrophy." So as of now i take 3 pills 4 times ...
