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Active discussions

Fampridine-SR... possible treatment for AMN?

jchumsley
  • By jchumsley · New reply yesterday at 10:35 pm
  • 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
  • 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
  • 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
  • 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
  • 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 ...

spasticity

jchumsley
  • By jchumsley · New reply November 10, 2009
  • 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
  • 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
  • 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 ...

Prolactin and Remyelination

shawtom2
  • By shawtom2 · New reply November 6, 2009
  • 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 ...

Gene Therapy

Quiller

Glyconutrients for AMN

msh
  • By msh · New reply November 2, 2009
  • 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
  • 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 ...

How much mustard oil to use?

ConnorsDad
  • By ConnorsDad · New reply October 31, 2009
  • In X-linked adrenoleukodystrophy (X-ALD) - Parents · 13 replies
  • Hello everyone. My 7 year old was diagnosed with ALD in March of this year. We managed to obtain 2 bottles of Lorenzo's Oil and started him on the oil after his initial blood work was done. Unfortunately ...

Please help us...

Nattyneedshelp
  • By Nattyneedshelp · New reply October 31, 2009
  • In Newly diagnosed · 14 replies
  • My 23 year old sister has just been diagnosed with a form of leukodystrophy, they are currently testing the sub type.. We are so confused... There is NO instance of this in our family on BOTH sides of ...

NIH survey of Parents of Undiagnosed Children

MLDdad

got the diagnosis

HARLEYSPARENTS
  • By HARLEYSPARENTS · Posted October 29, 2009
  • In Alexander disease (AxD) - Parents · 0 replies
  • 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 ...

Infant Leukodystrophy

Halls

QUESTION- VWM-GENETICS

mommyloveswyatt

reflux

HARLEYSPARENTS
  • By HARLEYSPARENTS · New reply October 26, 2009
  • In Alexander disease (AxD) - Parents · 1 reply
  • could anybody give there exeriences with reflux. our son pulls a grimising face and brings up clear fluid (acid)is taking ranitidine(zantac) was on 1.3mls twice a day. when he brings the acid up he goes ...

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