AMN/Mystery disease

[relay]

I am computer challenged! I am like a cave woman in training in this computer/technological world! FYI, I have, never, ever done a blog, before! I am suffering from AMN, big time, and would love some help!!! I KNOW THAT I COULD BE OF HELP AND YOU COULD BE OF HELP TO ME!

I have an amazing story to tell, but, am, not getting any help, whatsoever, with this AMN!!! My youngest son had a successful bone-marrow transplant with my older son being his 100% match.

I went, back, up to this "body" area on this blog as I am sooooooooo computer challenged that I DO, NOT, KNOW HOW TO DO ALL OF THOSE TAGS, IMAGES, & OTHER BLOG THINGS! I AM, JUST, HOPING AND PRAYING THAT YOU WILL READ THIS AND CONNECT TO ME!

[Stacey-W]

Hi Relay

Well you did it, you've posted your first blog so I'd say you've done just fine.

What symptoms do you suffer from with your AMN? I've been tested for it as my mum is a carrier. Still waiting for results.

Good to hear you had a successful bone marrow transplant done on your son. Maybe you could tell us how your son was before and after etc. Any problems you had with it?

I hope some other people blogs on here have helped give you some information already

It is difficult as it is so rare.

Best wishes

Stacey xx

[Hillary]

Hi, I am also a femail carrier of ALD my son died from ALD back in 2000 and I have had my diagnosis of AMN since he was diagnosed in 1997. My daughter is also a carrier. I have AMN symptoms which are problems with walking, sitting for long periods, severe muscle spasam causing pain in my legs and bladder problems. Thats a short list of my problems but it doesn't mean they don't affect my life in a big way. If Ican be of any more help please ask.

Best wishes

Hillary xx

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Relay

I am so glad you have joined the group - it's meant for people like you – and like us! All trying to figure out more about AMN and help each other deal with it.

I can only echo the thoughts that Hilary and Stacey have already made so do not feel the slightest bit concerned about being a neophyte in terms of blogging and using all this hi-tech stuff.

When you are ready, we'd all be interested in learning more about your "amazing story" - or as much as you want to say at this time.

If you can, please update your profile with a few words and put in your location. It isn't viewable in any precise way to the general public so it's safe to do it, but it's useful as you may find people who are near you who you can meet.

Very best wishes

Chris

[ROBSUPERNOVA]

I don't yet know how to set up my own blog, but at least I can reply to Relay and all of you.

I don't have AMN myself, but I have been reading all the research on ALD, AMN and Addison's for some time. I have some ideas which may alleviate some of the symptoms.

As we all know, the high concentrations of very long chain fatty acids are caused by a genetic mutation preventing these fatty acids from being recycled by the body.

For many years Lorenzo's oil has been used to reduce these fatty acids without knowing why it works. In brief this is my own explanation of why it really does help:

Our cells have an inbuilt system (called elongases) for elongating both saturated and unsaturated fatty acids. This is counterbalanced by little cellular organelles called peroxisomes, whose job is to break up these acids and pass them back to the mitochondria for recycling once they start getting too long. Unfortunately, those with the mutation cannot produce a certain transporter protein (ABCD1) whose own job is to carry the very long fatty acids into the peroxisomes, so these fatty acids just accumulate in the body's cells and in the bloodstream instead of getting recycled.

Lorenzo's oil contains oleic acid and erucic acid, both monounsaturated fatty acids. One of the elongases (called ELOVL3) extends both saturated and monounsaturated fatty acids, by adding two carbons at a time. By taking a daily dose of Lorenzo's oil, the patient is forcing ELOVL3 to concentrate only on elongating the erucic and oleic acids, ignoring the saturated acids which cause all the trouble. This greatly reduces the rate at which the saturated acids are elongated, effectively stabilising the concentration of VLCFA in the blood and tissues.

I have a good friend who has AMN, and together we have tried to find new therapies. Instead of Lorenzo's oil, my friend takes mustard seed oil, which is very high in erucic acid. We have combined this with a second therapy, and this combination has exponentially reduced the VLCFA in his bloodstream over a period of months. We are waiting to see if it will reduce the severity of his symptoms.

If anyone wants to contact me I am more than willing to explain stuff in more detail.

All the best,

ROBSUPERNOVA

[dryder]

I too can only echo the thoughts that Hilary and Stacey, as a IT professional, you are doing Great! There are many of us and would love for you to share your story!