How old were you when you first noticed symptoms?

Hi all.

How old were you when you noticed something was wrong? What symptoms were you experiencing?

My partner first noticed symptoms around 20 years old that was in 2010.

He had lower back pain,his walking was different even people were asking him if he had injured his leg or some sort and he was always tired.

We didn't think much of it at the time, he just thought he was tired, and with working all day he thought that was probably why his legs felt different.

Just wanted to hear others stories.



17 Replies

  • Hello Nicole

    Thanks for getting in touch. The short answer to your question is that it varies. Once a person reaches adulthood then, if the AMN gene is missing or mutated then AMN symptoms can appear at any time.

    Anecdotally, many men seem to get symptoms in their 20s or 30s. But I didn't see noticeable symptoms until I was in my 40s. Maybe I was the exception.

    We do have a poll running for females asking exactly the question you are asking. I will start a similar one for men.

    Medical science does not understand at present what factors determine when symptoms might appear. In some people the symptoms are very mild or virtually non-existent - again we don't know why.

    Does your partner get a bit depressed from what is happening to him? If so, and if you tell us where you live (country, city) we may be able to find someone near you that has the disease and who you could meet. This is a good way to find support and build confidence in how to deal with AMN.

    Best wishes


  • I have just posted a poll for this interesting question.

    Please go to


  • Where is the poll for women?

  • Hi Linda

    You're right! Sorry, I was thinking about the poll for female symptoms. I will rectify that immediately.

    Best wishes


  • Linda

    Here is the poll now:

  • Hello Nicole!

    I'm a symptomatic female and I wasn't diagnosed until my mid-40s, after a very stressful time at work exaggerated the symptoms. Performing a history with my doctors we determined that mild symptoms had actually begun in my early 30s.

    We all, as Chris said, vary greatly in onset of AMN and how we are affected. I hope he has a supportive, knowledgeable doctor to work with him. I'm glad that he has you! Support from those closest to us is paramount!



  • Hi Nicole,

    I'm a symptomatic female and I was diagnosed at the age of 36. I had no symptoms before the age of 32. I had no idea I had anything wrong with me. I gave birth to my first child at the age of 32. I started noticing something wrong with my walk. But I wrote it off because I gained a shoe size with my daughter. I figured it was just that my legs weren't use to the extra shoe size. Than I gave birth to my second daughter at 34. She was colic 22/7 for a few months. I guess the stress of this brought on my symptoms full forces. I kept ignoring the symptoms until a nurse friend told me that I had to go to a neurologist, she thought I had MS.

    I finally went at the age of 36.

    My symptoms have progressed over the years.

    I am convinced my pregnancies brought on the symptoms and the colic didn't help. I always wonder if I didn't have children would I be symptom free.

    All the best,


  • I wouldn't spend much time reflecting on whether not having children would have meant you were symptom -free. The characteristics of genetic illnesses like AMN are such that it is very unlikely that child-bearing has any relevance. Some neurological diseases (not AMN) are thought by some to be exacerbated by stress, but again there is no real evidence.

  • Every case is different, the sexes are different.

    My first recognisable symptoms were in my latter thirties. That said, things happened in my twenties that I now realise were characteristic of AMN.

  • Hi,

    I started with Urine frequency and had people in work telling me what have I done to my leg? I didn't know I was limping! I was 33 I then I had Urine retention and then 3 months later I had to use a walking stick.

    All the best


  • Hi.

    Steve that sounds so similar to my partner along with he had backaches and his legs ached a lot and then when we were out people were asking him why he was limping and if he'd had an accident. To be honest he was getting a bit annoyed that people kept asking. He was diagnosed 2012, he carried on at work until last month. (he was a builder) he was dragging him down massively! It was no good at all. He now has no bladder control. His balance is poor so now since earlIer this year he uses a stick always when we are out but thinking about it should of used one at the end of last year!

    Also Dean, I think he noticed little characteristics of AMN in his last teenage years.


  • Hi, I forgot to say that I was diagnosed with Addison's 7 years earlier in 2002 with no clue of ALD until 2009!

    Does your boyfriend see a Urologist? It is important as my bladder has very high pressures that was damaging my kidneys, the pressure is now relieved with intermittent self catheters and my recent kidney scan showed they are now good.



  • Hi

    So you was diagnosed with ALD not AMN?

    No he is not seeing a urologist. His consultant he sees said he could start on some medication to help his urine problem but we haven't heard anymore about it for the time being. I think he's more or less let jordan decide when he wants to take them.


  • Hi, my Endocrinologist diagnosed me with ALD and said I had about 5 years to live! I now know it's AMN, I have a scan booked for the 17th of October, I've had chemical changes on past scans and I'm hoping it's still inactive?

    I urge you to get referred to a Urologist and I think it's important to have bloods taken to check the kidneys and they are the best to recommend any treatments or medication I take Regurin xl (Trospium Hydrochloride)

    When my bloods showed my kidneys were not doing good he arranged for a Urodynamics test ( not very pleasant but not so bad) and this showed very high pressures in my bladder they were off the top of the chart! They told me unless I catheterise at least 4 times a day I would need dialysis, I also recommend drinking plenty of water as it keeps the kidneys flushed and dilutes the urine as when it's concentrated it can irritate the bladder.

    All the best


  • Hi Nicole,

    As Chris explained, every situation is different. My husband, Ben, first had symptoms in his mid-twenties- about 26. He had a visible limp in both legs but only when he was drunk. Then, it would be after he had had a couple of drinks, and then it was noticeable when he was sober.

    Now, Ben uses a cane about every other day. He can still walk but it's a noticeable lag for both legs. He generally uses a cane the day after he's had a busy walking day. For instance, we took my parents around London and walked for about 5 hours (incredible for Ben!) and it wasn't until the next morning that he felt extremely sore and stiff; his legs just wouldn't move. They usually ease up after he's up and walking, but it's generally worse the day after activity.

    He's had some bladder frequency and a slight lack of control. We now have a "5 minute warning" (much like the NFL's two minute warning!). When he tells me he needs the toilet it's about 5 minutes until he's so desperate that he could go at any moment. It hasn't caused a strain, really, because there are bathrooms everywhere these days. We tend to not go camping!

    Ben was incorrectly diagnosed with Hereditary Spastic Paraparesis in autumn 2013. His correct diagnosis of AMN came a few months later after a blood test. Finally, he was recently diagnosed with Addison's a few months ago. He's just turned 30.

    His regime hasn't changed much than before AMN, but tasks just take extra time. It's very noticeable when he needs to balance while reaching for something- his legs will shake uncontrollably and it sometimes causes him to fall. He uses walls and railings for support and any furniture in our house that's nearby. In restaurants, we tend to not sit in areas with chairs close together as he would reach out of he felt himself fall and they're just obstacles in his way.

  • My brother was diagnosed with Addison's in his teens and with AMN in his 20s. I was diagnosed in my thirties. I too have had people ask about my limping when I didn't even notice it. I'm kind of hyper aware of it now (at 53).

  • hello mam. I was diagnosed with AMN 10 years ago & Addisons at 17. I was having symptoms in my 20's. I'm 40 now with bigger problems. I can tell you all about AMN or addisons if you like. My email is

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