Hi, Just diagnosed with AMN at age 45 and medicated for addison's disease since 1997. wondering if anyone else is living with the same? hoping to communicate with people in the same situation.
I still have use of my legs and professor stated " walking stick in 10 years" at age 55
I suppose try to compare so I can understand where I am at and what the future will be
thanks
Hi!
I'm a female carrier, diagnosed with both too!! Where are you located? I have a Baclofen pump which helps with the spasticity. Are you in pain? I'm in constant pain, I wish they had a magic wand to lessen the effects!!!
Take care,
Crystal
Hi Brian,
My husband, Ben, was accurately diagnosed last year with AMN and recently diagnosed with Addison's. He currently uses a walking stick nearly daily. He's 30.
The trouble with AMN is that it's really tough to tell where anyone will be in a year let alone 10. The doctors for Ben misdiagnosed multiple times and then, once the correct one came through, had to Google the entire disease while he was in the room. Suffice to say, it wasn't comforting when an expert had no idea. We've been bounced between neurologists, geneticists, endocrinologists, and back again.
For others that I've been in touch with it's rather normal to have a void of information from doctors. Most of us communicate with each other to get an idea.
I hope you find some answers in this community as I have. There are a ton of wonderful resources (read: people) who can shed light on the different variety of symptoms and solutions.
Hi Brian
I am the administrator of AMN Easier, so welcome if that is the appropriate thing to say. I sometimes say, tongue in cheek, that we are all members of a club that none of us asked to join.
I can relate to your situation in that I was diagnosed in my early 40's and am now 71. For perhaps half of that time I managed without a stick. I don't have Addison's - no one knows why some of us do and some not.
It's important to live your life as close to normal as you can. Keep as fit as you can, and eat healthily. Try and stay positive. I was a bit reluctant to start using a stick but don't leave it too late to start because foot-drag is a problem we all experience and it's easy to have a tumble. People quickly stop noticing the stick.
Now, my walking and balance are poor, so I use an electric scooter for going any reasonable distance - say more than a 100 metres.
As you probably know there are no cures as yet and no medicine to slow it down. Many people here take medicine for spasticity and have other things that seem to help. You will find lots of discussions about these things. You will see a recent discussion about steroid replacement which may be useful.
Perhaps the most helpful thing to do is to meet others with AMN. You can learn a lot just by sharing experiences. You don't say where you live so if you can fill in your profile a bit it should be possible through AMN Easier to find some other AMN-ers near you.
Please keep asking any questions you want - there are lots of experienced AMN-ers here who can help.
All the best,
Chris
Hi Brian
Can I ask where you live as it may help if people near to you have had similar experiences.
Thanks
Cherie
Hi Brian,
I was Diagnosed with Addison's in 2002 aged 26 and had no idea with the connection with ALD/AMN until my problems started in 2009, was you aware of it? I'm now 38 and I use crutches or sticks to get about, I think it's important for us to keep using the legs and keep positive!
All the best
Steve
Hi Steve
I was 27 in 1996 when first advised of addisons and like you there was no connection with ALD/AMN until recently aged 45 due to my mobility problems and people thinking it might be MS
My specialist was right onto it and completed necessary blood test to confirm AMN
I do not use any aides and can still do what i would normally do with work, sport and chores but a little bit slower. today mowed lawns by push mower on three quarter acre block
very important to keep using your legs and I have a massage every three weeks
I understand each case/situation is different and i hope the use of aides is a long way off!!
Brian
thank you everyone for the information so far. I am so glad I have found a website that is able to share information with regard to both of my conditions addison's and AMN. I live in Australia, married and have 5 children(ptr has two children from prev relationship), work full time and still active with sports and children.
Hydrocortisone (10mg, 10mg and 4mg) and fluidrocortisone .01mg has allowed me to have a normal life but with the new diagnosis of AMN was searching for information to clarify what changes are ahead of me.
i have no pain and want to remain as active as possible for as long as possible
i have a brother who is soon to be diagnosed as he is having the same trouble with his mobility, his is 5 years older and not diagnosed with addisons at this stage
I am under a professor gerard de jong in Melbourne and had first interview/appointment last week
Brian
I have AMN, and Addison's. Each case is different, but you are not unique.
I am 52 and a few days ago reached the age my brother was when he died from AMN related causes. He was in a wheelchair for the last 20 years of his life. I finished 2 century (100-mile) bike rides this year and can still manage to run every now and then, when my legs cooperate. In other words, and as others have said, there is no way anyone can predict where any individual with AMN might be in a number of years.
Because AMN is so rare, I have to educate all of my doctors. The advice in the other responses to your question is on target. Appreciate every moment of your life, eat healthy, and stay active. I stay active not as a prevention, but to have some good memories one day of how my legs used to work.
AMN diagnosed for 30 years, I use walking sticks to get around and for long distances a scooter. My age is 56 and have found out that the progression of this illness will depend a lot on you. I find most people handle this illness by following doctors advice who know very little about it. 99% of the doctor treating people with AMN first see it when you walk in. I went to the conference a few weeks back in Baltimore and talked to most educated on this illness and they are still learning. You must understand these facts to start with. I don't comment a lot in here because most will blindly follow a doctor who knows little about this illness and progress there illness more rapidly. Those who think outside the very small standard medical treatment box for AMN will be looked down on. But here I go again. What treatments do our doctors give us that slow or treat the progression of AMN? Nothing, in fact most of it progresses it, honest truth. What is the number one thing we can do to slow progression at this time? After talking to the experts again and again it always comes back to a proper diet for this illness. When I was first diagnosised I handed my life to the very unknowledgable medicail professionals and let them prescribe all kinds of poisons to my body, many of the same things a lot of you are now taking. My illness progressed much more rapidly and I thought what I was doing was right. It wasn't, that's why I come in here to help others to avoid my mistakes. What is Addison's? Most will give the answer that it is caused by a defective non functioning adrenal gland and in most cases are wrong. What most if not all of us have is a overworked adrenal gland. We all have a functioning adrenal gland and depending how and if you overload it will get you diagnosed with Addison's. I am convinced that AMN alone will not overload your adrenal glands but added load will. No suplamental steroid will come close to handling the bodies need for adrenal support like your adrenal glands can. The bad effects of steroid use are many, read all prescription side effects before taking anything! AMN is being fought by our bodies and a key fighter is our adrenal glands, keeping them healthy is important. How? Simple, don't overload them. Most do it with a bad diet for AMN and than take steroids to try to counteract the effect. Many think steroid use helps the adrenal glands, it doesn't they shut down more because the body feels less need for production because you are taking a substitute. Your substitute can not handle variations in demand and you will have an adrenal crisis adventually. I had 3 that almost killed me while on steroids. I have been off steroids for over 15 years with no bad results. For me it took a lot of testing to find out what my loads are and steady monitoring by and Endrochronologist. You can not just stop taking steroids and your doctors will fight you on this, mine sure did, one gave me 30 days to live 15 years ago. Most came around with good results others refused to see me again. When you go outside the box some can not handle it, but inside the box has very little to nothing for us. I debated most of the night on writing what I have learned fighting AMN because many choose to attack there illness with blinders on and will do there best to try and disprove alternative thinking even when it works. It is very early in the morning as I post this, please excuse my many punctuation and spelling errors, because a few more hours of sleep is more important than proof reading right now, probably not later. My best to all in this fight and I hope this helps at least one person.
Thanks John
I appreciate your information and that is why I am glad that I have located this website
Over a period of time learning and understanding my body I would agree with not overloading your adrenal glands. I do not drink or smoke and I keep moving all day but at a very easy pace, working full time, playing sport, keeping up with the 5 children and caring for a daughter with a disability 24/7 with the help of my wife. Life is great and enjoying it as I can, but I am still mobile without any aides
Brian
Hi John H,
I understand what you are saying BUT in Addison's disease caused by the ALD gene which is the same for AMN, it is the accumulation of VLCFAs (Very Long Chain Fatty Acids) which build up in the body and cause destruction of the adrenal glands, this is a medical fact. Whilst I completely agree that a healthy diet and exercise programme are extremely important and I'm sure can help with AMN symptoms, but Addison's (primary adrenal insufficiency) is not caused by overload. I am pleased to hear that you seem to be managing without steroid replacement, but this is not normally the case and can be life threatening, so it must be emphasised that patients must not stop taking steroids without contacting their specialist first.
Addison's is a direct cause of an overload of the adrenal system. Having AMN or ALD does not guarantee you to receive Addison's. Lowering the load on your adrenal glands can stop you from getting Addison's. The long chain fatty acids in your body do not destroy your adrenal glands. They may overload your adrenal glands, a completely different thing. People with Addison's still have a working adrenal gland. This gland can be repaired by a lowering the load. I know I've done it that's a fact! It's also a fact I've seen it done in other cases. I also never seen it done using standard medical practices. My doctors told me it was impossible to do until I did it. What is written on this disease in many cases are not facts they are one person's conclusion. What is unknown about this disease could fill books. I am diagnosed with Addison's and have gone to the hospital three times in adrenal crisis while taking steroids. After getting off of steroids I've never been back and test normal on adrenal function. I did this by lowering the load on my adrenal glands and taking some supplements that repaired the adrenal glands.
I also never said to just stop taking steroids. What I have said is you must lower the load on your adrenal glands. I also said well I was getting off of steroids I was monitored by my Doctor. I still am monitor by my doctor and have adrenal test done yearly. All have come back well into the normal level of adrenal function for many years. Thinking outside the box is all we have in this illness right now. Repairing your body to function normally is a good thing, I don't understand why many seem to fight the process. Doctors can be wrong, so can information that is considered fact. What we are presently doing to treat this disease is not working and continually doing what is not working and expecting a different result is stupid.
Hi John, Whilst you are correct in saying that Addison's does not always occur in ALD /AMN a very high proportion of patients do have primary Addison's. True primary Addison's disease is not caused by an overload of the adrenal glands, it is caused by destruction of the adrenals which is medically proven through CT imaging, normally of auto immune cause. Secondary adrenal problems can be caused by excessive use of steroids or problems with the pituitary gland and this indeed can sometimes be reversed. There have been a few stories in the national press over recent months which stated that patients could die from watching scary films or getting overly stressed which is quite untrue! I know of people with Addison's who have been bungy jumping etc!
In ALD/AMN, patients suffer from idiopathic (unknown cause) primary adrenal insufficiency, Addison's disease, which is caused by the build up of VLCFAs which like they attack the myelin in the brain they also attack the adrenal gland, again medically proven fact. You appear to have been very fortunate to be able to come of all steroid treatment, so perhaps you had secondary adrenal problems. I can point you in the direction of several medical papers which detail this. I am also in contact with several Consultants/Professors who have studied adrenal problems for many years, through my work with ALD Life. I do agree with you that doctors can be wrong, and when you suffer from a rare disease you do have to try everything and be in control of how you deal with your disease, but there is so much medical evidence supported by CT imaging and research that they can't all be wrong.
This reminds me of a lady who found a limp duck and took it to the vet. The vet looked at the duck proclaimed it dead and said that'll be $10. The lady yelled can't you do more and with that the vet open the door and let the cat in. The cat jumped on the table looked at the duck from top to bottom look at the vet jumped off the table and left the room. The vet said the duck is dead that'll be $500. The lady yelled even louder what for and the vet explain for the CAT scan.
Well the CT scan is a great imaging device and see damage to the adrenal glands it can in no way tell if the damage is from longchain fatty acids. Since you seem to like well documented facts let's go with a few. It is a fact that most people with Addison's do not have a long chain fatty acid problem. It is a fact that most people with a long chain fatty acid problems do not have Addison's. It is a fact that many doctors in the treatment of the leukodystrophies prescribe steroids. It is a fact the continual steroid use damages and shuts down the adrenal glands. It is a well-documented fact that steroid use cannot come close to monitoring the adrenal function needed in the body anywhere close as good as the adrenal glands can. With this it can be said that it is a fact that a healthy adrenal system is much better to help fight leukodystrophy in your body. It is a fact there are many bad side effects of steroid use. It is a fact you can repair your adrenal glands by lowering their load I have done it personally. It is a fact I've seen others do it also. It is a fact that it is not well documented since the regular medical field seems to fight anything outside the box. It is a fact that some people have diseased our damaged adrenal gland is caused by accidents that have no choice but steroid use. It is my findings that many of the AMN man and leukodystrophy patients on steroids started on a maintenance dose which escalated to full-blown Addison's disease. It is a fact that the regular medical-practice never tries to repair the adrenal glands they go straight to steroids. This is a mistake in my opinion, one that greatly shortens the life of those fighting leukodystrophy. Without a well functioning adrenal gland it is much harder for the body if not impossible to fight this illness. I feel strongly that you must find the loads on your adrenal glands and lower them. Those loads vary from person to person from stress to diet. There are also many supplements out there that can help heal and build up the adrenal glands. I was on steroids for 12 years and had done a lot of damage to my adrenal glands. I had been in adrenal crisis three times with hospital stays. My doctors told me there was nothing I could do to repair my body and get off steroids. It took me only six months to come back with a normal adrenal function reading on the low side but I was completely off of steroids. I have been off for over 15 years with not one adrenal crisis and my adrenal function is in the high side now. Those are facts and not very well documented facts but facts nonetheless. It is a fact a well functioning adrenal gland will slow the progression of Leukodystrophy. That is all we have right now slowing the progression. I also believe there are other many other ways to slow the progression of this illness not discovered yet. I am busy working on those and can't quite understand why so many fight me on this one. It seems like simple logic to me. People seem rather listen to a doctor who first heard of this disease when you first walked into the room and a blindly follow. So many well documented facts have been proven wrong and many more will continue to be proven wrong. When somebody comes up with a cure for this illness our a cure for Addison's then they become facts until then they are only opinion.
I find your reply actually very rude and also factually incorrect. You have also misquoted me, I am well aware that most people with primary Addison's do not have a problem with VLCFAs as I stated most are auto immune cause, also doctors would only start a patient on steroids after testing with a Synacthen test. All men with AMN have high levels of VLCFAs or are you going to say the blood tests are wrong?? And the majority of men and boys with AMN/ALD do have Addison's disease.You clearly are quite misinformed and have no intention of listening to the other side of the 'box' as you call it, I know you have been told before by Chris, the administrator of this site about your comments and he sought the advice from Dr Robin Lachmann who is a very well informed clinician. I will stop this conversation now, I wish you well but am very concerned that you are giving out dangerous information which is only one persons experience, yours and not the experience of the many others who suffer from this devastating condition. I speak from experience as I am a carrier and have lost one son and my father. My other son is severely disabled, so I do have a huge amount of personal expertise. Please do think in future before you write sarcastic comments directed at a member of this forum I was perfectly polite to you.
I know a lot of men with AMN and most do not take steroids. I would say about 1/3 do. Saying that my advice is dangerous and wrong is very rude and not very polite. I have seen many people on steroids go in to adrenal crisis. Many came close to death. There is a safer and better way just because you choose not to believe it doesn't make it so. I don't know Dr. Robin Lachmann and don't much like secondhand he said she said information. I have lost family members with this illness also it doesn't make me an expert. I would also like to know what part of what I posted is factually incorrect and you're mine? I have posted I got off steroids with the help of an Doctor and I test normal now I've never told one person to just drop off the steroids. I just stated it could be done. I have showed all my adrenal test to Dr. Wolfgang(probably the most educated man I know on this illness) and he agrees I do not need steroids anymore. I've seen many others do the same thing. On a final note if Chris wants me to leave the site I have no problem doing so.
JohnH, you have more than had your say. Karen has very lucidly explained to you what we know to be the facts of AMN and adrenal insufficiency. These are facts based on accumulated scientific evidence. Clearly you are unimpressed by science or clinical treatment based on evidence.
Your advice for AMN men to reduce and eventually eliminate steroids is very dangerous. Your belief that adrenal insufficiency is caused exclusively by something you call adrenal overload caused by poor diet ignores what we know to be the case about AMN.
I advise ALL AMN men not to listen to your advice, but to speak to knowledgeable clinicians. They will all tell you that damaged adrenals are caused by the VLCFA build up caused by your AMN. We don't know why some men with AMN don't have adrenal failure - I am an example of this.
Finally, your comments to Karen were unacceptable and demeaning. Karen is an extremely knowledgable lady on the subject of AMN and Addison's. She is leading ALD Life's inititiatives in this area, so knows more than any of us on this subject.
So please desist.
Wow, you think it's dangerous to repair your adrenal glands and wean yourself off of steroids under doctors supervision? But you think taking steroids with all their bad side effects it's not dangerous. Don't think we'll get any good advice off of this site I'm leaving won't be back.
Hi Brian, I was diagnosed with AMN exactly a year ago at age 43 and was diagnosed with Addisons 1990 when I was 20. I've struggled with a lot of thoughts during this year, have tried to stay positive as everyone says, with some luck, but not all the time. I met my doctor recently and asked for referral to a psychologist, so waiting for an appointment to be scheduled within a month or so. Thought it could be good to speak to someone... I still walk ok, but have experienced (or imagined because of the knowledge of having AMN?) a slight deterioration with balance and coordination since I was diagnosed. Have noticed that my legs work better in general on an active day than when I have been sitting in the office in front of the computer all day long, so that might be a proof that I should start exercising on a more regular basis than I do currently. My goal is to be able walk without walking stick or other aids for as long as possible in my life, but I'm not sure if I can have influence over that.
Best regards
Jesper
The situation you have described reads similar to mine. Addison's years ago then a recent diagnosis of amn. Weeks after the diagnosis it felt like my legs became worse but I think it was after understanding the diagnosis and what was wrong could not be changed for the better by taking a tablet, injection or operation. I too work behind a desk all day and can struggle at times to get out of my chair but once warmed up and moving it becomes easier with my legs. I have a massage every three weeks that includes stretching the hip area and leg muscles which is really beneficial. My massage therapist has advised to always moving, walking, bike riding and being active.
After reading other peoples stories and situations it seems to vary on when you will use sticks or be in a wheelchair, I hope that it will be some years for both of us
Thanks for you time, take care
Brian
Hello everyone,
Many of you will have been following the "discussion" above between JohnH, KarenH and myself. No doubt that some of you - possibly AMN men, especially those recently diagnosed - may have been bemused and confused by a lot of what was said.
I wanted to let you know that, as administrator and founder of this forum I have decided to restrict JohnH from posting further. However, the system does not prevent him from contacting you individually via the private messaging facility. If he does that, and you don't want this to happen then please contact me directly.
I have taken this action because his advice goes in the face of everything we know about AMN and Addison's. AMN men with adrenal insufficiency have this condition because of the build-up of VLCFAs due to the AMN. That's the facts. It is not because their diet was poor and that they were therefore "overloading" their adrenals. You can find plenty of gossip on the internet abut something called adrenal fatigue, and plenty of charlatans making money by advising diets that can restore your adrenals to health. There is no evidence to support any of these claims.
I refer you back to my earlier post after an extensive email discussion with Dr Lachmann whose opinion I respect. It's potentially life-threatening to decide to stop taking your steroids. You may be OK for some time, but when then next stress situation or unrelated illness occurs, your steroids won't be there to protect you.
I hope you understand why I have taken this action. Please post or contact me via messaging if you have any questions.
Best wishes
Chris
Thank you Chris.
Thank you for posting, Chris. My brother has adrenal insufficiency and is on steroids.
I met John H at an ULF annual conference. He conveyed the same notion that he "cured" his Addison's disease. He was quite intolerant on Western medicine as opposed to natural homeopathic medicine which he practiced. I cringed when I read his first reply. My brother almost died from an Addisonian crisis at 19 (He did not take steroids!) and If it were not for an astute doctor who diagnosed him with Addison's, he surely would have. I was also advised to take the test and also also tested positive at 17. Thirty years later my brother was diagnosed with AMN after gait problems. And again, I tested positive.
Now, I walk with a cane and cannot walk a long distance. I will need to get a scooter - shoulders are bad.
I have fatigue and peripheral neuropathy along with burning pain in my feet. I maintain my health by diet and going to the gym which along with yoga, has been most beneficial to me.
A positive outlook is essential. I subscribe to New Mobility which has been awe inspiring to me.
I live for the moment and appreciate what I can do and what I have in my life.
Steve
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