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Answers,
My son is 18 and each month or so it seems he loses more muscle control. this past year he went from a walker to wheel chair. his ypper body strength seems to be holding but we have noticed his grip getting weaker. All we have been told is that he has Leukodystrophy, but no specific type. is there a way we can learn more and have a better diagnosis?
does he have AMN - it sounds a lot like my son's symptoms. Is he cognitively o.k.
Hello paulm68 ~ you're in the right place! The ULF can help you find the name of doctors who can figure out exactly what he has. My heart goes to your family ~ we're all working with this one way or another!
All my best to you and you family!
Cognitively,
J struggles with retention, it takes him longer to process data. He attends standard schooling with an asistant. He is a Juniorand Attends a Joint Vocational School.
What is AMN? All we have been given is this large bucket called Leukodystropy and as you know that bucket contains alot.
Hi
To find out if your son suffers from AMN, which is the adult form of ALD, you could start with having a simple blood test, "very long chain fatty acid test" (VLCFA). The Kennedy Kieger Institute deals with testing for a lot of Leukodystrophies. Males who suffer from AMN often also suffer from a secondary condition called Addisons disease, a high percentage infact.
I wanted to add. If you haven't already, it would probably be better if you could see a specialized Doctor who deals with leukodystrophies. I sure you have. There are a lot of leukodystrophies and testing is expensive. We had to pay Kennedy Krieger first and then get reembursed from our insurance company. It is helpful to know more what you should test for. Did you say your son had had an MRI scan? ALD/AMN in males is passed on through females. Sometimes there are signs of it in other family members that had been diagnosed as another disease such as MS but in retrospect you could probably say could have been ALD/AMN. Only a few ALD/AMN cases are what they call a new mutation (I think I am right on this terminology) meaning this is the first time it has ever occurred in a family member. There are some Leukodystrophies that are said to be of unknown origin like you said in your case. I find this difficult to understand and don't know really what that means, does that mean all the unknown leukodystrophies are the same one they just don't know why that particular one occurs? Why don't the doctors know?
Please read my reply to you posted under.... need a doctor in Ohio. God bless you and your family.
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