Hello - from Michael Conway - Leukodystrophy Su...

Leukodystrophy Support

195 posts

Hello - from Michael Conway

MichaelConway profile image
1 Reply

Hello. I am Michael Conway, almost 50 years old, from Renfrew (near Glasgow Airport) in Scotland.

I have been seeing a neurologist for about five years. My symptoms are very bad balance, falling about is if I am drunk. Also I get pains in mu upper arms and legs sometimes. I have a particularly bad memory.

I received about 8 x MRI scans and 3 x Lumbar Punctures and an electrode test to my feet/lower legs and several very long fatty acid tests.

Last Christmas eve (2015), my neurologist thought I had MS, but in May/June, after more tests, told me I have ALD. I have now only to see my neurologist on an annual basis. I have two appointments coming up. Tomorrow (13/10/16) I've to go to a Genetics clinic and on 27/10/16, I've to go to a Endocrinology clinic.

As a side issue, my father had Motor Neurone Disease and my maternal uncle had Addison's disease.

What is your story?

Written by
MichaelConway profile image
MichaelConway
To view profiles and participate in discussions please or .

The ability to reply to this post has been turned off.

1 Reply
Nathana84 profile image
Nathana84

Hi I am 32 years old and have had it since I was 6

My brother had died because of the disease at 10

However I have been on the oil since then but have not had any symptoms of being able not to function on day to day life

Not what you're looking for?

You may also like...

I hate to ask but i need to know…how long after the disease sets in do male children have before they lose the battle with this disease?

My son was diagnosed in January and is already showing signs of organ failure and it is only June....

drugs for 8 years old boy suffering ALD

Hello! My son a year ago was diagnosed with ALD. The disease progressed rapidly, now he already is...

I have 3 sons who have just been diagnosed with ALD

The youngest 2 will be having bone marrow transplants. Was wondering what peoples experiences were....

What's your view on Lorenzo's Oil?

Do you have an opinion on Lorenzo's Oil? Do you think it works? Or, do you think it is a complete...