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Hepititis C causing Leukoencephalopathy
- By kristie777 · New reply 10:43 am
- Discussion in Newly diagnosed · 1 reply
- I have written you all before about my sister Robin. She was just dignosed with hepititis C and her Neuro said he now think she has Leukoencephalopathy. She has no clue how she could have got Hep C. However ...
Adrenoleukodystrophy (X-Linked)
- By Ashok · New reply yesterday at 4:28 pm
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 1 reply
- We are the parents of ALD effected 20 years boy. The disorder has been detected early 2004. Now he can't see,move, hear, and also speak. So I would like to ask you that there are any therapy/medicine ...
Fampridine-SR... possible treatment for AMN?
- By jchumsley · New reply yesterday at 11:29 am
- Discussion in Adrenomyeloneuropathy (AMN) · 4 replies
- Hello, Has anyone heard about this drug? It is being developed for MS but the developers claim that it might be useful for other demyelinating diseases. It works by improving the conductivity of nerves ...
got the diagnosis
- By HARLEYSPARENTS · New reply yesterday at 9:47 am
- Discussion in Alexander disease (AxD) - Parents · 1 reply
- our baby boy harley is 1 in 2 weeks, it all started when he was 5 1/2 months, all the tests and stress and finally he has been confirmed of having a rare mutation gene of alexanders disease. been told ...
ALD Mom's who are carriers and Son's who have ALD
- By BMA · New reply November 22, 2009
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 18 replies
- I am almost 50 years old. I have a son who discovered he had ALD June 2004, his 4th year of college. We discovered he had Addison's disease when he was 13 years old but was never tested for ALD. It seems ...
Update on Tyler
- By snugglebearsmom · New reply November 22, 2009
- Journal · 3 replies
- Tyler recently returned from his 1 year checkup at Duke with Dr. Prasad (October). There aren't any signs of further progression, same as his 9 month checkup. He is off of most of the meds, including ...
LBSL-Leukodystrophy
- By varna · Posted November 22, 2009
- Discussion in Other leukodystrophies · 0 replies
- Are there any newly diagosed people interested in discussing LBSL please feel free to write ...
Treatment for ALD
- By AA · New reply November 22, 2009
- Discussion in Treatment and therapy · 3 replies
- Can anybody share his experince of having ALD or AMN in adult age? My son is 21 ...
graves disease
- By lisajo · New reply November 21, 2009
- Journal · 19 replies
- I go to the endocrenologist in october they couldnt get me in any sooner .I have a bulging eyeball and my thyroid is underactive and not responding to the thyrixozine(synthroid) and I am in so much pain ...
GENE THERAPY
- By LaurieRB · Posted November 17, 2009
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 0 replies
- Here is a link from Dr Patrick Augbourg. He attended the conference and announced the breakthrough in treating ALD with Gene Therapy. http://www.youtube.com/watch?v=oUqY0Q2l2 vE Any questions regarding ...
Treatment for Adrenoleukodostrophy
- By AA · New reply November 16, 2009
- Discussion in Treatment and therapy · 27 replies
- Ny son 21 years old has white matter damage on his MRI and elevated very-long-chain fatty acids in his blood. By reading on Internet this is confirmation for only one disease - Adrenoleukodostrophy. Is ...
Digestion problems with Leukodystrophy (CACH)
- By lexismom · New reply November 14, 2009
- Discussion in Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM) · 5 replies
- Hi everyone! My six year old daughter has CACH, one of the more rare forms of Leukodystrophy. She has always had problems with digesting her formula. We had to place a Mic-key button when she was two ...
Dr Knapp
- By zoe4manaia-rain · New reply November 13, 2009
- Discussion in Other leukodystrophies · 9 replies
- hi there i am curious to know if anyone had has the opportunity to meet or have contact with Dr. Knapp in Holland ...
15 month daughter undiagnosed
- By cjackson · New reply November 13, 2009
- Journal · 22 replies
- Hello everyone, I was just wondering if any one can relate!! I have a 15 month old daughter who is my specail fighter! She has had feeding issues since day one. She has a unknown leukodystrophy, and infantile ...
Leukoencephalopathy
- By AND · New reply November 12, 2009
- Journal · 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 ...
A.J.
- By lisajo · New reply November 11, 2009
- Journal · 39 replies
- A.J. is my 8 year ol grandson who was recently diagnosed with leukodystrophy ,possibly methocromatic and we are lost and confused and in so much pain right now and we are looking for answers ...
spasticity
- By jchumsley · New reply November 10, 2009
- Discussion in Adrenomyeloneuropathy (AMN) · 15 replies
- Hello, With my AMN (diagnosed in 1986), spasticity is main issue (along with tightness and weakness in my legs). I've been on baclofen since my diagnosis, but I feel that the benefits are less. I've looked ...
Second Opinion Program
- By Halls · New reply November 10, 2009
- Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 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 ...
AMN
- By AA · New reply November 9, 2009
- Discussion in Treatment and therapy · 8 replies
- We are still not sure my son has ALD or AMN. Can somebody share experinece with AMN. What are the test results that confirm AMN? Only VLCFAs or something else? What are the symptoms? Can progression stop ...
"HYPOKALEMIA OR LOW POTASSIUM"
- By mandyblue · New reply November 8, 2009
- Journal · 32 replies
- I want to share this research information in "My Journal". This is a very long collection of articles, that explains in great detail, about Hypokalemia or Low Potassium. It is for anyone who needs help ...
