AMN progression

[JustAGuyWithAmn]

Just kind of wondering what everyone's progression was like. I first started having symptoms around my 22nd birthday and I just turned 24 this year. Been walking unassisted for the past two years but I am getting AFOs made to help with my feet and the hyperextension in my knees. Just wondering how long people went before the started walking with assists or aids. I know it varies from case to case.

[Aaron98]

Welcome to the club that none of us signed up for!

To answer your question, I think it's fair to say that it's different for all of us. My grandfather who had AMN began exhibiting symptoms in his mid-30s, and started using a cane in his 40s, and finally a power chair in his late 50s and 60s. By contrast, I started exhibiting symptoms as early as my late teens (but predominantly in my 20s). I began using a cane when I was about 31. I started using a wheelchair for traveling longer distances about two years ago (I'm 36 now).

I see assistive aids as being tools. There's no hard and fast rules about using them. For me, if I only have to travel a short distance, I'll just walk on my own. I "wall surf" around the home, grabbing onto counters and walls as I shuffle around the house. If I'm walking more than a block or two, I'll use my cane. If I'm going more than a few blocks, I use my ultralightweight wheelchair.

I don't like AFOs, personally. I've never tried a set that were at all comfortable. I already have enough pain in my feet and legs (from neuropathy) to deal with that additional discomfort.

I hope all of this answers your question. Again, welcome!

[JustAGuyWithAmn in reply to Aaron98]

Hey thanks! And thanks for the reply. That definitely answer my question. I am kind of wondering what peoples experiences with AMN are like. Part of it is to kinda gage how fast its progressing for myself but also to see how people manage getting around. I thought "wall surfing" was funny because I do a lot of that at work and around the house!

[Aaron98 in reply to JustAGuyWithAmn]

May I ask where you live? We have a monthly men's AMN video call in the US put on by ALD Connect. I don't participate every month, but it's a great group of guys. We also have a Facebook page we could connect you with. Guys do a good job of answering questions of the newcomers.

[JustAGuyWithAmn in reply to Aaron98]

I live in Canada but is the meetings are video calls I dont see why I wouldnt be able to participate. Do you know when the next one is? Also, if you could give me the name of the facebook group that would be great.

[Aaron98 in reply to JustAGuyWithAmn]

I am sending you a personal message with a link to the Facebook group. From there, it should have the ALD Connect calls listed.

[monkeybus]

It is a strange one, because if I think back, I was exhibiting symptoms when I was 16. Those being constipation and fatigue. The only advice I ever got was stop being lazy and eat more vegetables.

And then when I was 22 I noticed an occasional bubbling sensation in my legs. Get yourself down the gym was the doctor's sage advice on that one.

I have always been a bit clumsy as well, clomping about everywhere. Not too much grace in my walking.

I started to trip when I was drunk around the age of 28.

But it was around the age of 40 that the fatigue went through the roof and the spasticity manifested proper. And it came on quick. Space of a year I was limping proper.

Eight years of limping unaided, then I bought some crutches. I'm 50 now, and I can manage without the crutches, but stick me in a crowded place or a train station with people darting this was and that and it is murder.

I could even think of symptoms from when I was 14 that I'd attribute to AMN, but if if it's purely spasticity, I have had 10 noticible years. I am still on two feet, but I see the speed of this thing and I don't know what state I'll be in by the time I am 60.

As long as I haven't gone cerebral I'll count that as a win

[JustAGuyWithAmn in reply to monkeybus]

I totally hear you and I definitely agree with the last part. I felt it come on quick over the course of two years I went from walking to limping to needing aids. So how long in total have you had AMN and do you have to travel long distances and if so do you just use the crutches?

[monkeybus in reply to JustAGuyWithAmn]

Noticeable AMN, I have had for about 17 years.

Back then it was really just heavy legs, slight limp. I put this down to my varicose veins which were a sight to see, like bunches of grapes poking out of the skin at the back of my knees. After all, what else could it be? Had them stripped, legs felt a bit less heavy, but the return to normal never happened.

Spasms. I just called them cramps. Tried everything, magnesium, stretching, hot/cold patches. No, they just progressively got worser and worserer.

Fatigue as well. Just thought I was getting old. But I was in my 30's. When the spasticity ramped up over a year, so did the fatigue.

Travel long distance? Depends on what long is. I have always lived in major cities. Always a bus stop/subway round the corner. I'd have to say 100 metres is my limit for walking. I can go further, but it's like I have to think out every step. After a while, I start to trip more, the tiredness gets exponentially worse and I just give up.

I was in Doha airport in Qatar a couple of weeks ago, and that airport is huge. Have to book the wheelchair for airports. Apart from the walking, all that standing in line is not for me.

[JustAGuyWithAmn in reply to monkeybus]

Wow okay that's really tough. I get you on the fatigue my adrenal glandes are fine its just it takes a lot of effort to walk. I totally get the walking and heavy legs. When I get tired I actually start walking with a cadence. So I ll start walking and saying 1 and 2 and 1 and 2. Helps with focus because I am in the same boat, I gotta think about every step. I am assuming you take baclofen? I found it helps with spasms and stiffness but too much just turns me into jello haha.

[SongStream in reply to JustAGuyWithAmn]

I mutter to myself: "Pick up your legs" soemetimes as I walk. Otherwise, I could trip which may lead to a fall.

[SongStream]

I recalled difficulty running. This was during my early teens in the gym during track. My legs were very tired.

[JustAGuyWithAmn in reply to SongStream]

I had a similar experience. I used to play hockey and run track and at the beginning of every season I would be so tight and my knees would just be killing. This is a very weird disease a lot of random symptoms. If you dont mind me asking, do you walk with any assists? Like I said up above I found AFOs to be super helpful but its different for everyone.

[SongStream in reply to JustAGuyWithAmn]

I used to for a short time before it aggravated my burning neuropathy even more. I now use a cane and I have a scooter which helps a lot with the fatigue factor.

[JustAGuyWithAmn in reply to SongStream]

I dont doubt it. Ya seems like a lot of people use canes might be something I have to use more often.

[Julia240]

А что такое AFO?

[JustAGuyWithAmn]

I don't speak russian so I am using google translate. Я не говорю по-русски, поэтому использую гугл-переводчик. This is a AFO. это АФО. Ankle foot Orthotic. Голеностопный ортопед.

Sorry dont speak russian but I tried my best. Извините, я не говорю по-русски, но я старался изо всех сил.

Ankle Foot Orthotic (AFO)