Hi all. I have been coping with this for around eleven years now and still manage to get around on a daily basis. I do resort to a wheelchair when my wife wants to hit the big shopping centres,much better than moaning and groaning about walking great distances.I have a list of stretches and balance exercises from my physiotherapist which i try to do on a daily basis to keep my leg muscles working as best as they can.I own a pizza shop which i have been running for the last 13 years,so i am on my feet every day. Aside from the general balance and walking and balance problems,my biggest concern is ED.I have seen a specialist on numerous occasions regarding this, and at first my nuerogenetic dr did not think it was related to my condition,she has since changed her views on the subject since my last visit to her,so hopefully she will help find a successfull treatment for it. I am turning 40 next month and not ready for the scrapheap.If anyone out there with this condition is having this problem,please contact me at pizzaman27@bigpond.com so i/we can share our issues and maybe help get the right help to fix this side of the condition.

Dear Shane, sorry, I do not understand the meaning of AD, could you kindly explain? Many thanks, Valentina

He said ED, not AD: erectile dysfunction. Think of the Cialis ads.

Hi. I have ald/amn and i've been struggling with lots of issues. One of them is ED. The easiest fix from my doctor was taking Levitra, which is an ED pill. It directs blood flow to the area. The better fixes are clearly excercise, diet, and other therapies. So, sorry I didn't help too much, but the easiest way out is to take a pill. However they aren't cheap, so I'm definitely looking for a better alternative. Light weight training helps immensely. PS: not cheap means almost $20usd per pill.

hi lonelycat. thanks for your input.i was hoping someone would come forward and talk about these other issues with this condition,i have tried over the years first with viagra then cialis which failed to work after a while,i then opted for injections,but after a couple of years these no longer help.lucky i have a very supportive wife that understands what is happening to my body. I am waiting for a referal from a urologist to speak about the last permanent solution. penile implant. it is a scary thought but from all the information i have read regarding these permanent solutions my mind is somewhat at ease. if anyone else out there has the same issues,please speak out.

Hi Shane, I live in Perth and was diagnosed with AMN about 4 years ago. I'm still going through the frustration phase which rears its head every now and then. Anyway, we should stay in touch as it would be good to talk to someone who knows what Im talking about. ps Im turning 40 this year as well!!

hi brems, wow.i actually live 1.5 hours from perth. my uncle lives in the same town as me and has this as well,but like my mum,he's from a generation where they don't speak of their problems.I guess i would be the same if not for my wife.She has certainly made me a stronger person. Do you have any children?. i have 3 daughters and a son. look forward to speaking again.

I forgot to let you know. I am 24 years old. I've been experiencing symptoms for about 2 years. It has pretty much devastated me. However I'm happy to share information with people like you. The ED treatment is fairly recent, only the last few months. It really isn't a huge issue yet, but I imagine that it will get worse and worse over time. Basically drugs help, but physical training/therapy is the way to go. Plus drugs cost money, which I don't have. Bye!

Hi lonelycat. my symptoms starting appearing around 27 years of age,basically my friends said i walked like i was drunk all the time. after visiting a genetic doctor and having blood tests,i could then accept that it was"nt just some mental issue.I have since had mri's on my head and spine and thankfully i don't have the side of this condition that affects your brain,only the thinning of the spinal cord. although it's still not a great prognosis it could be worse. i have tried all medicines and pills and over time they don't work.i currently use injections which are expensive but still not the greatest of results. i am waiting for a referal to see a urologist. I started seeying my genetic neurologist a couple of years back and she did'nt believe ed was a part of this condition but as the years go by,i think she is starting to see that it is part of this condition. bye

Hi Shane Thanks for getting back to me. I have 2 girls(one of them is a teenager!!) and they definitely keep me busy. I am a doing my post grad in Primary teaching and am flat out at present. Anyway, will talk very soon. Cheers

The "genetic neurologist" needs to look up AMN on Google; any description of the condition will mention ED as a possible effect. Go to United Leukodystrophy Foundation site for a pretty thorough description.

Hello all, I am glad that this topic is being discussed. ED is a common symptom for AMN. Yes, prescription drugs are an option, but so are herbal approaches. For just over two years, I have been researching and experimenting with various herbs and herbal concoctions and I have come to the real conclusion that they not only work, but they improve sensation, performance, and satisfaction. Best of all, they are natural and cheaper than ED drugs, with near-negligible side effects (assuming you are healthy enough for sex). There is some information available online, and the book "Natural Sex Boosters" by Ray Sahelian, M.D. is very helpful. If anyone wants more info, ask away or send me an email at jchumsley@yahoo.com. Jason (I'm on Facebook also at facebook.com/jchumsley) About me: I'm 42, male, married with three kids (Stephen, 12; Christopher, 9; and Lindsey, 2) diagnosed with AMN in 1986. My mobility is compromised: I wear AFO braces and I use forearm crutches to get around for better speed and safety.

I should have mentioned: the above book gives examples and recommendations for both men and women.