Newly diagnosed AMN woman w/AMN son looking for diet/oil advice and experiences.

[Blacksheep]

Hi. My name is Kristie and I am 45. At 12 years of age I tested negative for VLCFAs and was told I dos not have ALD and could not pass it on. My sister, who has AMN, advised me to get retested since the test is only 80% accurate. I came back positive. I then cheated with my 23 year old son and got his adrenal function teared. It was insufficient. Since then he has also tested positive on the DNA test. Neither of us feel like we have symptoms although the neurologist seemed to disagree. We both apparently have some loss of sensation that we were unaware of and I have pes cavus starting. It was drilled into my head that this disease was untreatable, by my afflicted mom who died from the disease at 68. The women in my family don't seem to be as mildly affected as others I read about.

I am looking for all sorts of dietary information. I am looking into spinach, certain oils and oyster mushrooms. I would love to hear what most people out there are doing and what things are and are not helping. We go see a lipidologiat soon and I don't plan to start anything without running it past him/her and establishing some baseline bloodwork, but I want to learn as much as I can between now and then to share and understand better.

[AussieBob]

I strongly recommend that you go to the ALDConect website and link only with those who are experts on ALD /AMN. It may not be easy depending on where you live.

[Blacksheep in reply to AussieBob]

I am registered there as well. I am looking for more peer to peer advice.

[AussieBob in reply to Blacksheep]

Try the ULF who have a peer to peer program. I can link you to AMN people here in Australia if you wish

[AussieBob]

Are you in the USA ?

[Blacksheep in reply to AussieBob]

Yes

[AussieBob]

As I mentioned you can try the ULF but I am happy to link you to some Aussies here but I need to know how to connect you. By email?

[AussieBob]

I have started a possible link here for you. Just need your comments on how to contact as not all are on this site

[Blacksheep in reply to AussieBob]

[e-mail]

[AussieBob in reply to Blacksheep]

I will start the intro for you

[Blacksheep in reply to AussieBob]

Thank you so much!

[AussieBob in reply to Blacksheep]

I will send you some AMN info and hope that you and Michael can assist each other. He is a great guy

[Casabona]

Hi Kristie

My name is Michael and I live in Brisbane. I am a mate of AussieBob. I have AMN, I am 60 and now cannot walk unaided (I need a forearm walker or scooter). You might want to check out The Wahls Protocol by Dr Terry Wahls. This was developed for MS patients but I believe is relevant to any chronic disease. This is a serious lifestyle change diet though so not everyone can manage this.

AMN runs in our family also and I have a brother and two cousins with AMN plus my brothers daughters who are carriers and can potentially get AMN. I have passed your information on to them also as my niece Kelly is pregnant with her first child and thank God he is negative but she went through a very difficult time before this was confirmed.

I am happy to be a point of contact if you need some peer to peer chats.

[Blacksheep in reply to Casabona]

Thank you. My mother was extremely afflicted with AMN pretty early on. She was wheelchair bound by 50. My brother is 58 and so far addisons only. My sister is 60 and has gait abnormalities. My niece and nephew are positive for the gene through DNA testing. My nephew and son both have the adrenal.

Congrats on the new baby being negative!! I have 10 and 26 year old daughters who have not been tested and a 6 year old granddaughter as well.

[wilburlois15]

All I can say is keep moving! I am a 38 year old male diagnosed last year after 10 years of increasing problems with walking. As there is no cure and our body creates the VLCFAs itself, the only way forward in my view is to try to maintain my peripheral nerves as best I can, and that is through using them, and specifically using the ones which deteriorate the most: those in my lower legs. Thus, I force myself to go out for a 30 minute - 1 hour walk every day, at least once a day. Ultimately I have no idea whether this will improve my symptoms but my fitness has improved significantly and psychologically it has had a huge positive difference. If only I could turn the clock back 5 years, when I was much more mobile, and force myself to go out then as opposed to becoming increasingly sedentary.

On diet, I am not sure how much of a difference you can make. Fat is essential and myelin, which is being destroyed by our VLCFA, is itself made from VLCFA! However, we can always alter the input. I avoid most vegetable oils as these are higher in VLCFA than dairy or meat oils. I use butter for most cooking.

[Blacksheep in reply to wilburlois15]

Thanks for the info. I have no choice but the be on my feet all day because of my profession and hobbies. I'm in great shape right now.

I am just not willing to accept that lowering my VLCFAs isn't helpful. I feel like the trials were flawed and too short to dismiss the benefits of the oil.

Also, my 58 year old brother had adrenal disfuction and some bladder spasms but that it is. His wife is a vegetarian and they eat quite a few veggies, including a lot of leafy greens. My sister, 60, has some foot neuropathy and gait abnormalities. I can't help but wonder if my brother's diet isn't partially responsible for his lack of symptoms.

[monkeybus in reply to Blacksheep]

I was a vegetarian for decades, was only when I turned carnivore that my health started to fail.

But, maybe it would have failed anyway, I am 45, prime age for the onset of adult AMN.

I am currently easing off on the meat and i always feel better for eating less. Then again, off the top of my head, The Wahls Protocol recommends plenty of quality meat (correct me if I am wrong).

Regardless, I am eating less meat (and calories in general) and I feel much better for it.

[Blacksheep in reply to monkeybus]

I'm not going Wahl's that I know of at this time. Looking at ways to get "statin" for oyster mushrooms, ways to trigger my abcd2 gene and ways to reduce my VLCFAs thru ingesting oil. I do not agree with the concensus that LO is useless in AMN.

I am also 45.

[DianeinCape in reply to Blacksheep]

Hi Blacksheep, I just read your posts from a year ago. I am new to this site. I am a female carrier with symptoms of neuropathy and back pain. Can you give me an update on your situation? Has diet changes improved your condition? What is working for you? From your previous posts it looks like you believe in LO, lots of vegetables, and ways to trigger your abcd2 gene. Have you found something that is helping you? Thanks in advance for your feedback.