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Journals
Today!
- By Ginger09 · Posted April 9, 2009
- 7 replies
- Well I was blessed by waking up this morning in my "so called" right mind" and I could get around pretty good, so I thought hey this may be a good day after all! I did have to go to physical therapy today ...
Tired of not knowing!
- By Ginger09 · Posted April 4, 2009
- 15 replies
- I was 47 when they found the first 2 spots on my brain and they thought it was PML but it's not. I have been suffering severe headaches for years, and they got so bad in 2006 I couldn't take it anymore ...
Leukoencephalopathy
- By AND · Posted April 4, 2009
- 11 replies
- Hello! Friends! My name is Andrey. In the summer of 2008 to my son Victor, have diagnosed: Leukoencephalopathy with brain stem and spinal cord involvement and elevated lactate on МР spectroscopy. Spastic ...
LBSL кто нам поможет?
- By AND · Posted March 26, 2009
- 20 replies
- Здравствуйте! Друзья! Меня зовут Андрей. Летом 2008 ...
Seattles mouth
- By brandyh74 · Posted March 23, 2009
- 0 replies
- Its sunday March 22nd, Seattle has been waking up every night at 5:30 coughing and has dried blood on the sides of her mouth. I took her to her doctor on thursday, he said her gums are inflammed, red ...
Van Der Knaap Syndrome
- By anniechang · Posted March 22, 2009
- 2 replies
- I am interested in connecting with other families that have a member with this form of Luekodystrophy ...
Hello everyone
- By LaurieRB · Posted March 12, 2009
- 2 replies
- I have dealt with ALD seems forever. I had a Brother named Robert (Bobby) who was 11 mo older than me. When he was 7 he started to have "problems". Of course this was over 30 years ago. He passed away ...
Lexi went for her Botox injections this week
- By lexismom · Posted March 9, 2009
- 0 replies
- Lexi had another round of Botox injections this week, she did really good as usual. Last time the injections helped the teeth grinding alot. So far this time it has not helped yet. It can take up to two ...
Lyso-What?
- By StephLynStill · Posted March 9, 2009
- 4 replies
- Just in case you haven't seen it. ;) xoxo s **ps - that's my kiddo ...
government doctors
- By mjpayea1721 · Posted March 5, 2009
- 5 replies
- because of my time in the Air force I now qualify to get my health care from government doctors. these doctors are interested in my adult onset ald because that is the research they are doing the most ...
Cherry Red Spot is a telltale sign...
- By StephLynStill · Posted March 4, 2009
- 7 replies
- Today I returned a telephone call to a woman who's cousin's 7 month old son, Ben, has been displaying possible symptoms of a neurometabolic disease. You know, darting eyes, not rolling over, trunk weakness ...
AMN brain involvement?
- By wenALD · Posted February 22, 2009
- 11 replies
- I recently had an MRI of my brain and neck. The part that has me concerned is that I am a woman with AMN. I know that I have numerous problems with my legs, balance, incontinence. But I thought I was ...
Update on Tyler
- By snugglebearsmom · Posted February 18, 2009
- 0 replies
- As many of you know, I took Baby Jack to see Tyler with my Mom. We had such a nice visit . Tyler was so happy to finally meet his baby brother and see his Grand ma. I was curio us to see how Tyler would ...
life???
- By wordnerd58 · Posted February 13, 2009
- 8 replies
- I know its been a long time since anyone heard from me, but life goes on and I try to ignore my condition. But it doesn't always work. My husband is true believer in if you don't talk about it it can't ...
Making a difference
- By mmeitz · Posted February 12, 2009
- 7 replies
- My brother has leukodystrophy- 4H and has to be in a wheelchair for most movement. His condition has affected the whole family as Im certain it does wherever it strikes. My goal is to help people realize ...
my baby has effected wiyh VANDER KNAAP DISEASE
- By mbh · Posted February 11, 2009
- 19 replies
- Hi, I got to know that my 8 months old baby has effected with lukodystrophy- vander knaap disease through MRI, MRS reports. Can any one tell me the impact of this disease? i dont know much about this ...
where to start fromm here
- By punk2pink · Posted January 5, 2009
- 4 replies
- its crazy how fast u put weight on. u dnt even realize it until its to late. im so ashamed and disappontied in myself. i know food is my enemy but the more i hurt the more i eat. not because im hungry ...
Marshalls Mom
- By Marshallsmom · Posted December 31, 2008
- 5 replies
- My son Marshall is 7 years old, He was diagnosed with Adrenal Leukodystrophy on Sept 5, 2008. We left for Duke University Hospital on Oct 11, 2008. He had his Stem Cell Transplant on Nov 7, 2008. He is ...
Another update on Tyler...
- By snugglebearsmom · Posted December 24, 2008
- 0 replies
- I went out to NC the first weekend in December to see Tyler. it was so hard to see him the way he was. The chemo has made his skin look like it's peeling and it's dark in some spots, he told me he is ...
This is what I know about 4H syndrome
- By mmccarl · Posted December 19, 2008
- 2 replies
- I thought I would post this and share, since I have not seen it posted on the ULF site as of yet. It may or may not help someone else. I got the information from Dr. Nicole Wolf, in the Netherlands. Michelle ...
