I am a 53 year old female with quite bad AMN symptoms. I have been told by my neurologist that sometimes the deterioration plateaus & stops

[deirdrecorr]

Hugo Moser years ago told me that my symptoms would just keep getting worse. Has anyone else been given information about the prognosis for a female with deteriorating mobility? Thanks! Deirdre

[bozzer]

Hi. Not a female myself but this article will be useful. aldlife.org/wp-content/uplo...

[deirdrecorr]

Hi Bozzer,

Thanks very much for the article.

Deirdre

[Hillary]

Hi Deirdre, I am 58 and was diagnosed in 1997 when my son was diagnosed with ALD. My symptoms started a long time before that but no one knew the cause. I have had problems with mobility for about 10 years but things have slowly got worse over the last 5 years. The trigger for some of it was repeated surgery on my right foot. I had a damaged ligament which was un repairable. I do think my AMN symptoms are very much of the relapse remitting kind of thing. Some days I am much worse than others, I generally use two arm crutches around the house and on short journeys and use my wheelchair when shopping or on days out. Yesterday was a bad day, I described it as feeling as if someone had removed bits from my back that connected to my legs, getting out of bed took three goes and this lasted the rest of the day but today is not nearly as bad. If I can help with any info please ask. I also have the BRAIN article which I am reading today.

Hillary

[jolocny Volunteer]

Hello Diedre,

I'm 55, was diagnosed almost 10 years ago. I have encountered continual progression, most of the time quite minimal. But add up the minimal and they can become big!

Are you still working? Do you have a family?

I do know that keeping life as peaceful as I can has helped me in many ways. Whether it keeps symptoms at bay - can't tell you. I do know that I feel better for it and can deal with the rest easier because of it.

I hope you're using all avenues to make your life easier to stay involved - crutches, wheelchairs, scooters, etc. Even with forearm crutches, walking can be exhausting for me. I've been able to get around so easily with a wheelchair! Yes, there's the getting in and out of the house, the car, different buildings ... but I'm finding my way!

Most importantly ... take care of yourself!

JoAnn

Bozzer - thanks for the article! I haven't seen it before and look forward to reading it!

[deirdrecorr]

Hi Hilary & JoAnn,

Thanks for the info!

I do have a family. 4 teenage kids including 2 ALD bone marrow transplanted boys. the younger boy is well (bar Addison's disease), but the older one is deafblind, epileptic etc.

I keep as active as I can and swim twice a week.

Just wondered if it continues until you eventually can't walk!

Deirdre