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Fampridine-SR... possible treatment for AMN?

jchumsley
  • By jchumsley · New reply yesterday at 10:35 pm
  • Discussion in Adrenomyeloneuropathy (AMN) · 3 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 ...

Hepititis C causing Leukoencephalopathy

kristie777
  • By kristie777 · Posted November 17, 2009
  • Discussion in Newly diagnosed · 0 replies
  • 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 ...

GENE THERAPY

LaurieRB
  • 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

AA
  • 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)

lexismom

Dr Knapp

zoe4manaia-rain
  • 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

cjackson
  • 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

AND
  • 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 ...

graves disease

lisajo
  • By lisajo · New reply November 11, 2009
  • Journal · 18 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 ...

A.J.

lisajo
  • 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

jchumsley
  • 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

Halls
  • 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

AA
  • 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"

mandyblue
  • 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 ...

Prolactin and Remyelination

shawtom2
  • By shawtom2 · New reply November 6, 2009
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 2 replies
  • Has anyone else heard of the "University of Calgary" discovery, that PROLACTIN helps with Myelin Repair? I've read some articles about this, and I was curious if anyone else heard of this. Here are a ...

LBSL кто нам поможет?

AND
  • By AND · New reply November 6, 2009
  • Journal · 20 replies
  • Здравствуйте! Друзья! Меня зовут Андрей. Летом 2008 ...

Gene Therapy

Quiller

Alexander disease

bkabo
  • By bkabo · New reply November 2, 2009
  • Journal · 78 replies
  • Could anyone give information on Alexander disease? If you know anybody with this disease or know someone who suffered from this disease I would like to get in contact. I have a 17 yaer old son suffering ...

Glyconutrients for AMN

msh
  • By msh · New reply November 2, 2009
  • Discussion in Treatment and therapy · 1 reply
  • Has anyone tried Glyconutrients ? There are so many products out there claiming to be the cure-all that I have become a bit skeptical. We have "friends" trying to palm this product off on us but it is ...

has anybody found useful info

HARLEYSPARENTS
  • By HARLEYSPARENTS · New reply November 1, 2009
  • Discussion in Alexander disease (AxD) - Parents · 18 replies
  • hi. our son harley is 8 months old have just spent the last 10 weeks in hospital with him having seizures, was inshubated 3 times due to having prolonged seizures. he then started having vacant episodes ...

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The United Leukodystrophy Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. The United Leukodystrophy Foundation Support Community is sponsored by the United Leukodystrophy Foundation in partnership with Inspire.