Hello from a new user!

[Cambridge_Chris]

I am relatively new to the site, and just wanted to say a quick 'hello' to everyone here, and say that I've found it very helpful to look through what people are saying, and other peoples' experiences of AMN.

My medical history is fairly straightforward. I was born in 1987, and when I was 13, I was diagnosed with Addision's disease after a four-year struggle with a mystery illness. The doctors soon then discovered I was positive for the ALD gene. I had regular brain scans until the age of around 18 (I think), when my doctors thought I was 'out of the woods' when it came to the acute childhood form of the condition.

I spent a long time studying biochemistry at university, and after a brief stint working post-doc as a biochemist I decided to move into something behind a desk: where I wasn't in danger of burning a lab down or irradiating everybody because I'd dropped a sample!! Having wound-up in Cambridge, I decided to stay here with my wonderful partner, and we've bought a little house in the suburbs; all very domesticated!

I started showing AMN-type symptoms about eight years ago, and have experienced a very gentle decline in leg functioning over the years, mainly relating to leg stiffness, and very strange feelings in the feet. I have quite marked balance problems, and am starting to experience urgency issues (!). Now I am 31, and have started to resort to using a cane whilst out-and-about, even if principally just as a signal to other people to give me a bit of space! I still cycle a lot, to work and back every day which is a 7 mile round-trip, and I think that helps with leg strength. I do stretches too, about ten-minutes-worth, once or twice a day, which I think helps a lot.

Thanks again for everyone for making this site what it is - for rare conditions like ours it is a life-saver. If anyone is ever in Cambridge, give me a shout!!

Chris.

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Chris

Welcome to the forum, and from another Chris.

We’ve been running for a number of years and are fortunate to have a wide range of AMN men and women as members of the site. This gives us plenty of diverse experiences to draw on.

As I am sure you have discovered, although AMN has common core phenotypes, people often experience many other types of symptoms. They also try alternative drugs and therapies. There is little or no empirical evidence for a lot of these medicines but if individual patients feel they have been beneficial that’s fine. Our main concern on the forum is to make sure that those therapies that may be suggested are not in some way harmful.

I am fairly certain that you are the first AMN patient who is also a qualified post-doc biochemist, so we are fortunate to have you on board. I am sure you can comment very helpfully on some of the trials and experiments that will occur in future.

Your approach to AMN seems very good to me. The biking and stretching each day is the best way to keep the legs going for as long as possible. You don’t mention anything about the drugs that you may be taking. Over the years I have tried just about all of the standard anti-spasticity drugs and found them to be unhelpful. Now I take only Mirabegron for the bladder.

You seem to be doing very well on self-management, but please ask if there is anything we can help with.

I would like to come and see you in Cambridge sometime over the summer - I live in London. I have some other contacts in the biochemical science field in Cambridge so we might be able to share some of these. In any case, it would be good to meet. I will contact you on the AMN Easier private message line - key an eye open for it.

Best wishes

Chris

[JasonHarnum]

Welcome Chris

[Cherie]

Welcome Chris.