Hi, I am looking for some advice on f... - Leukodystrophy Su...

Leukodystrophy Support

195 posts•

Hi, I am looking for some advice on follow-up of asymptomatic men with ALD. My brother is 32.

12 years ago•6 Replies

I have read the latest review article relating to regular MRI scans and adrenal function tests. Has anyone been under review in the UK?

We have a significant family history - my aunt was first to be diagnosed (in retrospect we have other members of the family that probably had it too), she has quite severe AMN at the age of 70ish. I am a carrier (age 35) and underwent free fetal DNA testing and then CVS when pregnant with my son who thankfully is negative. I have since had a daughter (2 years) who we haven't had tested as to whether she is a carrier or not. My mother is 65 and asymptomatic as yet.

My brother lives in Glasgow - are there any specialists there you can put me in touch with? I am in Bristol and understand that one of your advisors is based here.

Many thanks for your help.

Amelia

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danemead

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6 Replies

•

mo5012 years ago

hiya, i live in glasgow, the best place to get referred to is The Southern General Your brother should be attending there, his gp, should refer him pls let me know how he gets on

danemead• in reply tomo5012 years ago

Thanks mo50, have you/family seen anyone specific there?

mo50• in reply todanemead12 years ago

Yes my sons endicrine consultant referred us to southern general, unfortunately, [cant remember nerological docs name], wasnt that helpful. just said he agreed with endicrine doc, that my son wouldnt live past 25, No follow up, Where as my other son Who died, had better treatment at yorkhill,

mo50• in reply tomo5012 years ago

Where in glasgow do you live?

mo50• in reply todanemead12 years ago

Hi Danemead get your brothers gp. to refer him to Dr McCllend at Western Infirmary Glasgow, He is endicrine consultant, HE IS VERY HELPFUL AND VERY UNDERSTANDING MAN, HE IS VERY GOOD WITH MY SON, WHO CAN BE DIFFICULT AT TIMES,

12 years ago

Hello Amelia,

Thank you for getting in touch. I am really sorry to read about your family's history with ALD.

We have a contacts list of people who would be able to refer you to a medical specialist in Scotland. If you would like a copy, please send me an email to info@aldlife.org. I have also sent an email to our members in Scotland asking for their advice too.

I look forward to be hearing from you.

Hi, I am looking for some advice on f... - Leukodystrophy Su...

Leukodystrophy Support

Hi, I am looking for some advice on follow-up of asymptomatic men with ALD. My brother is 32.

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