Hello - from Michael Conway - Leukodystrophy Ca...

Leukodystrophy Carers
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Hello - from Michael Conway


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?

1 Reply

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