My husband has recently been diagnosed with AMN (no cerebral involvement at the moment). He's been prescribed Lorenzo's Oil but we're wondering if anyone has a diet sheet they could post on the forum. Low fat diet is pretty straightforward but details of vitamins, supplements, additional oils or alternative therapies would be useful. What's good to improve walking etc? Also if anyone else is taking L.O. ....what side effects you've noticed. He's feeling cold all the time since he started on it and we're not sure if it's because the usual fats are missing from his diet or if it's a side effect of the LO.

Hi! My name is Russ; I have AMN and Adisson's. I am a retired teacher... I was diagnosed at age 37; am now 68, still no cerebral involvement. I am planning to start taking mustard seed oil - I hear it has similar resdults to L.O. I have been feeling cold for years - nothing to do with L.O. I do take lovostaten; I had no sooner started taking it(2 wks.) when my upper legs started feeling stronger. I could walk much better.My geneticist told me it fights the long-chain fatty acids. Ask for it!

Thanks Russ. He had tried the mustard seed oil while waiting to see if he could get the LO covered by health prog. Thankfully it's covered. He has a doctors appointment coming up so we'll ask for the Lovostatin then. It's encouraging to hear you've no cerebral involvement at 68. His walking has been bad for over 10 years but he only recently got a diagnosis. He's 55 now so hopefully the slow progression, like your own, means cerebral involvement may not happen at all.

How can you get lorenzo's oil? I was told it is only available if you are in a study?

*That's how you can get it free. Perhaps if we googled it... Hope we can get more than just the movie...

We are not in the U.S. so the neurologist just gave us the prescription and our pharmacy ordered it for us from the manufacturers which for us is SHS. Perhaps you can have it imported to the U.S from one of the suppliers in other countries. Details are on the www.Myelin.org website (look under Lorenzo's Oil International in the drop down menu off the side menu). Seems strange that it can't be gotten in the U.S. Presume it's a condition of the trials or something. On the down side there's no proof that it works for AMN but of course we'll try anything in hope.

*Thank you so much.

I am in Canada. I contacted the company directly and they told me I cannot order it unless I am in a trial!

*I live in London, Ontario. I'm going to try mustard seed oil and later ask my doctor about L. O.

Has anybody actually felt better with L.O. ? (In the UK is no longer prescribed due to the ambiguity of its results)

We are in Ireland. We've had no problems getting it I don't know how things work elsewhere but here if your doctor prescribes it that's all you need to have the pharmacy order it. Surely there has to be a way around this for you. It seems crazy. On the other hand there's not much indication that it works for AMN. Too early to say if it'll make a difference. The mustard seed oil is probably just as effective though given the composition is the same. I've read CQ10 is useful too.

My brother took LO and followed the diet protocol for a few years but developed heart problems and had to have a quad bypass, which from every indication was a result of the LO. I felt the diet was to restrictive and didn't start on it and was told by our doctor "it's a good thing you didn't take the LO as well" I took Lovostatin for a short period to reduce the VLCFA's but soon my blood tests showed the high enzyme count consistent with heart muscle damage so stopped it. I haven't been on any therapy for quite a few years now and the walking difficulties now at 44 are progressing rapidly. I am glad to hear that there are men out there into their late 60's who are still doing well. My brother passed away at 49. Prayers and good wishes to all of us dealing with this disease!! Take care, Jeff

At my 34... (and already dragging my self through life) you are my motivation easygoing1... so pls keep it up!

Hey everyone! I'm a 53 yr old female with symptematic AMN. I was diagnosed in 05. I was on a trial study with Kennedy Krueger Institute in Baltimore using Lorenzo Oil. The stuff tastes dreadful. My biggest complaint, and my families was the 'gas' that was created. Pretty nasty, and I didn't feel any different. I took myself off after a year. I need to look for my diet info that I got from the study and maybe I can post it. I didn't see any other women on here and I know they are out there with AMN. Guys, are your muscles in your legs real painful? I have no one to compare my pain with besides my sister...thank you!

Hi Bese, He says he doesn't have a lot of bad pain as such, just a lot of stiffness and the muscles are really hard. Achilles tendons are a problem, always stretched and so easily pulled and torn which is very painful. Knees are a bit the same. Pain is not bad every day . Soles of the feet are hypersensitive so cannot walk barefoot. Using crutches all the time now. Hope LO will slow progression but must raise heart issue with the doctors here. They're not used to dealing with this so we can't be sure they know everything there is to know.

*Hi, All. I have AMN. My ankles and toes are numb (I'm 68.) The muscles in my calves are tensing up, but no pain so far. The soles of my feet are not numb. I have very poor balance. Because of te numbnessx and weakness in my upper legs, I can no longer walk fast to compensate for tshe poor balance, so use canes/crutches walkers, and a scooter for the malls or walmart. Bese: Thanks for your info on L.O. My neurologist says that diet has very little - perhaps no - effect on AMN. I thought women could only be carriers (as was my mother...)

Hi Beese. I am a 42 year old female with AMN. I do have pain in my calves but mostly burning in my feet and legs. Most of the time my feet and legs are numb but sometimes my feet too are hypersensative. I do have knee and hip pain. If you want to contact me feel free.

It seems there are some of us that are "lucky" to be affected by this disease in the way that pain receptors are damaged more than any other nerves and therefore there is more numbness than pain. My brother was in a great deal of pain, where as I have little pain but much numbness, the best description I have been able to come up with is that my legs and feet always feel like they are in the "waking up" state after having been asleep due to loss of blood flow. Always the heavy/numb/dead/pins and needles feelings. My left knee and ankle seem to be the trigger for spasms and discomfort most of the time. I have heard from other people on another website like rareshare that the interrupted pain receptors happens sometime, in fact there was one female who had a fractured pelvis that was discovered by accident and she hadn't been having much pain at all, and her doctor had told here she should be in agony. Jeff

Hey all again...feel like I've just hit some kind of lifeline here! I'm so excited to meet you all, even tho' it may only be through the internet! Seems like I hear of more people in the European countries having ALD or AMN. Yes Russ, women are carriers and there are a few of us who also have the symptoms...tho' maybe not as severe as the boys or men. I sometimes wonder tho'. I, like Britt have the burning feet and calves mostly...can't feel heat in my lower extremities...i have a sit down job so if i don't stand regularly, my legs just lock up and hurt so bad in the thighs and buttocks! I have 2 sons who have tested positive for the gene but so far, thank God, are not having symptoms. They are 30 and 32 yrs old and I worry so about them.

Thanks, Aish

Diet is very important in AMN and ALD

I take mustard oil and can have 12g of fat a day. That's not much. Sometimes though I do cheat because after spending all of your life eating good food then none at all is a bit hard. Someone earlier said they had the actual diet sheet. I'd like to know if we can get a copy of that.

Briit Carrier: 12g of total fat? How can you survive? Are you referring to saturated fat? I consume no more than 4-6 g of saturated fat a day, and no more than aprox. 30g of total fat. It is saturated very long chain fatty acids that we need to watch out for.

Unfortunately the amount of vlcfa we consume doesn't necessarily mean that the level of vlcfa in our blood will be high or low. Our bodies will make vlcfa out of other materials just like the way our bodies make cholesterol out of other materials. Some folks have low cholesterol regardless of what their diet includes and it seems that vlcfa's work the same way. This may be some of the reason that some are affected earlier in life and some later in life and to varying degrees. Sorry to put the negative spin on things here, but it is something we all need to be aware of. Merry Christmas all. Jeff

*Hi, All. Itake lovostaten to fight the vlcfa's. works very well... I exercise my legs daily; it helps.

*I'm so happy to hear that other patient shave numbness and tight muscles in their lower legs.. It is better than pain, by far.

Hi All, My daughter's father (my ex) has AMN and although I knew she may develop symptoms later in life, she is only 20 and is having a lot of symptoms now. She has pain/numbness in her legs, a lot of back pain, fatigue and within the last month began having intermittent bouts of extreme involuntary muscle twitching when she sits or lays. She has started using a cane for bad days and was recently put on Lyrica by her neuro which is helping some with the pain. I think one of the hardest things for her is not having anyone else who has the disease to talk to - if any ladies who are symptomatic would be interested in possibly e-mailing her, I would greatly appreciate it. Her e-mail address is acosenti@uno.edu. Thanks and God bless.