Michael Conway - Adrenoleukodystrophy (ALD)

[MichaelConway]

Dear HealthUnlocked - My name is Michael Conway and I have Adrenoleukodystrophy (ALD). I have trying to raise awareness of this condition by speaking to ALD Life, Raremark, CLIMB and local newspapers. I can send anyone links / attachment to my ALD story if anyone is interested. Please contact me on:- [e-mail]

[COwithAMN Administrator AMN EASIER Volunteer]

Dear Michael

Everyone here either has AMN or has a relative or friend with the disease. Mostly it's the former. So we are always interested in someone new and their story. Rather than sending your attachment to people by email, can you post it here for us all to read and respond to? That's what AMN Easier was set up to do. I am sure we can help you over time.

All the very best

Chris

[MichaelConway in reply to COwithAMN]

OK Chris. There are four articles. Three of which are below:-

raremark.com/adrenoleukodys...

greenocktelegraph.co.uk/new... to Port Glasgow dad who lost battle with MND/

mndscotland.org.uk/latest/n...

The fourth one I only have as a pdf and I'm unsure how to post it here.

Look forward to hearing from you.

Michael

[COwithAMN Administrator AMN EASIER Volunteer in reply to MichaelConway]

Hi Michael, I have read the three articles you have posted and thank you for doing that. The fourth PDF article you can post most easily by simply copying and pasting the text from the PDF into the message space here. It will lose the formatting and pictures but it will probably be sufficient.

Your story is in many ways similar to many men and women here on AMN Easier. What is unusual in my experience is that your Dad had Motor Neurone Disease. I don't believe there is any scientific evidence of a link yet the connection is interesting and perhaps a bit disturbing.

Your experiences with AMN are very similar to many of us here. You are doing all the right things, mainly just to keep moving and keep a positive attitude. For most of us here, AMN becomes something we learn to live with. It does progress but slowly.

On this forum there are several hundred folks in the same situation from around the world, so there are always people who will help from their own experience. Many people experiment with drugs or diet regimes that are not prescribed on the NHS. It's a personal choice, and apart from the costs involved, these may or may not help. I have had AMN for 30 years, having been diagnosed in my early 40s (I am now 74). I have tried lots of drugs and therapies but am by nature sceptical about drug claims unless there is good evidence. Trouble is, with a rare disease like AMN, the clinical studies are few and far between.

However, in the last few years, there has been a real uptick in research related to AMN/ALD and of course, all the genetic research is very encouraging. So keep positive.

I hope you can plan to come to the ALD LIfe weekend which will be in London in May 2019. You will meet many people who are dealing successfully with the disease and also meet researchers.

I hope this is helpful.

All the best

Chris

[COwithAMN Administrator AMN EASIER Volunteer]

Michael

I meant to add that perhaps the best web site to explain AMN that I have found is this one x-ald.nl

I should also comment that the disease is normally called AMN and not ALD for adults like yourself. Are you sure it is ALD and not AMN? Your symptoms sound like AMN.

Chris

[MichaelConway in reply to COwithAMN]

Chris - I asked my neurologist about ALD vs AMN and he said "Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN) are clinical manifestations of the same underlying genetic abnormality. AMN is subdivided into two types - with and without brain involvement. In ALD the brain, spinal chord and peripheral nerves are involved at varying degrees. In AMN the clinical picture is largely due to spinal chord and peripheral nerve involvement. There is no specific test to differentiate between these different forms of the disease. Diagnosis is determined by appropriate investigations which include MR imaging of brain and spinal chord, and nerve conduction studies, all of which you have had. As you know, your brain scan shows abnormalities consistent with ALD In addition, your nerve conduction studies show evidence of peripheral nerve involvement. Therefore, this supports a diagnosis of AMN with brain involvement" - Michael

[monkeybus in reply to MichaelConway]

MichaelConway , can you post pics of your brain scan?

I'd love to see.

Here are mine:

healthunlocked.com/amneasie...

healthunlocked.com/amneasie...

[COwithAMN Administrator AMN EASIER Volunteer in reply to MichaelConway]

Michael, OK i see now why you say ALD not AMN. However, you will find more adults with the disease by starting with AMN. The brain abnormality may be a small spot, as monkeybus's own MRI shows. Trouble is with this disease the way it develops can be so different from person to person. So still important to keep doing everything you can to stay as fit and strong as you are able. With your wife's cancer though you have a lot on your plate, but you are coping very well.

Chris

[MichaelConway in reply to COwithAMN]

Thanks for these nice words of encouragement, Chris. Much appreciated.

[MichaelConway]

Please find the fourth link to the story.

greenocktelegraph.co.uk/new...

[SongStream]

I'm curious to all who have had MRI's, specifically those with brain abnormalities, what MRI was used? For example, a 3T machine is more advanced and can pick up more clarity on pathological conditions involving the brain, spine, etc. Prior to this, 1.5T was the high standard. I believe my MRI's did not use a T machine.