New research treatment?

[SusanBr]

''Research funded by MS SOc into 2 drugs already used to treat other conditions could lead to the first treatments to prevent MS from progressing. MS causes damage to myelin, and the nerves can be damaged with the body unable to repair the damage. If we can protect these nerves from further damage then hope is to slow or even half the progression. Dr Matt Craner of the University of Oxford, is investigating whether the blood-pressure drug amiloride can be used to protect the nerves from damage. Phenytoin is drug that has been used for elipsy and identified the potential to protect nerve fibres from damage. Dr Raj Kapoor at University College London is leading clinical trial.''

I picked up the above from a MS Booklet and wonder if anyone had heard of the drug amiloride and phenytoin and if it has been looked at for ALD/AMN treatment?

I am being looked after by Dr Kipps from Winchester who knows nothing about AMN and I will be seeing him in December, first visit since diagnosis in June.

May ask to be referred to the London specialists logged on recent blogs so would be interested in future trials,if any.

Sue

[MissSheryl]

This does not directly answer your question, but the Kennedy Kreiger Center at Johns Hopkins in Baltimore has the largest research effort for AMN. I participated in a study there for Lorenzo's Oil. Failed, no help for women.

[jack3953]

i took phenytoin for 2 years following my stroke as a way of preventing seizures that can return to people who get seizures in the original stroke event. i stopped taking it 2 years ago as i was concerned for the side-effect that caused gum distrortion [gingival hyperplasia].

during this period my spasticity in arm got worse. i am better of without it.

the demyelination in MS is likely very different from that in AMN/ALD, and the chances of picking up help from an MS trial are small. i get very angry at the lack of help i get from drs. maybe there are things which would help with AMN/ALD but my GP will not even perform blood tests for VLCFAs to see if the original diagnosis was right.

best wishs, jack