I have been getting a numbness on and off in the bottoms of my feet, but recently I have noticed the same thing happening occasionally in my hands as well, mostly in my fingers. Has anyone else had this occur? Although it happens sporadically and not often, I still feel it could be linked to the AMN. Thanks so much!
Merry Christmas, Everyone!
Peripheral neuropathy. Join the club (seems you already have).
At least it isn't excruciating pain. Same ballpark, if you ask me. Nerve damage/demyelination, the signals from your extremities aren't reaching your brain like what they should.
4-AP fixes it for me. Course, the signals go both ways. To and from your brain. Helps spasticity, makes sense it'll also help sensation.
I get like my legs are bubbling. Dead fingertips, and feels like the soles of my feet are covered with foam rubber, about 2 cm thick.
For me, this one is an easy fix. Gabapentin helps too, albeit at the cost of getting stoned.
Can you get 4AP prescribed
Hello,
All depends what country you are in.
I have done a lot of posts about 4-AP in the past. Myself, and others here buy from here:
mod4alll.com/zc11/index.php...
4-AP is cheap, and certainly worth trying. I primarily take it for spasticity, but a bonus is how it helps with constipation and neuropathy, and spasms (to some degree).
If you are in the USA, good luck getting insurance to cover anything on it. My neurologist tried everything she could to get it covered, but they would not. They stated that since my diagnosis was not MS they wouldn’t do it.
It's an out and out crime that 4-Aminopyridine isn't on general prescription for our disease.
It's so cheap, safe, and effective. If it doesn't work, that's that, but it certainly works for me, and I'm hardly unique in all this.
I tried to get it prescribed, doctor said no go, so I just bought some, then I told him I was now taking it. He said OK.
Same story with 4-AP-3-MeOH and Modafinil.
This disease can be a real monster. Palliative care is all we can do, and if the medical establishment isn't prepared to help, you have to step up.
There you go, that's my New Year's end, rally the troops speech finished. I'll go away now.
you mentioned the three danger words: cheap, safe, and effective.
NOT acceptable for the medical 'experts' 
Hello! For me, my feet have been completely numb for years, the degree of numbness comes and goes. I find myself stretching my toes often now - just to see if I still can.
When I was in a study at Kennedy Krieger they paid a lot of attention to my feet/toes to record the level of numbness with each yearly check-in. It's not been fun, but I don't know if I'd be able to walk at this point due to the numbness. How can a person walk with no idea where his/her feet are?
And, yes, I also have occasional numbness in my fingers. I hope that doesn't decide to "move in"! I also wonder how much of that has to do with my bilateral shoulder injury???
I hope you had a wonderful Christmas!
"stretching my toes often now - just to see if I still can." I've been doing this constantly for years on my left foot rotating and moving toes just so I know it's there. I had a dog that used to growl (rescued) when I did this. Right now, I'm doing it. I just can't feel anything. However, I can still walk. Why? I use muscle memory. I can still recall and remember how to walk. I pick up my feet because I know I need to. When on the treadmill, I can alternate with and without support when walking up to 3 mph. Ithas taken me continual and regular practice. I have no feeling below my knees and at each assessment for the Min-102 trial, I always answer with a question when they ask if I can feel the needle prick. Don't give up. I myself refuse to be a victim to this messed up disease. I am the most stubborn individual and it has played to my advantage We are most fortunate we don't have paralysis (severed spines) and are quads or paraplegics. I have been inspired by their progress and determination. I feel grateful for what I can do. Appreciate every moment on what you can do and try to improve on what you can't. I've been challenged to the max. And I like a good challenge. (Except for the blowtorch burn on the soles of my feet and night time foot kicks that keep me up because the pipeline of medication continually needs to be replenished due to ineffectiveness waking me up tired and groggy. And concrete legs. That concludes my wordy pity party to my community for which I am ever so grateful.)
Thank you for both your responses. I am 43 and a carrier. So far these are my only symptoms.
I just want to join in and say yes, I also experience numbness and tingling in different degrees from day to day and slowly it gets worse. For example, my hands are now feeling it mildly, whereas it was only in my feet. I was diagnosed when I was 46, I'm now 55.
But I'm also stubborn and stay active, so despite walking problems, I still try to live my life as best I can.
Julie, I do the same! I still work out 5 days a week. I will work out until I am no longer capable of this.
That's great! Still though, you may have to modify along the way but that's ok! I find that I no longer have the energy to work out 5 days a week. I'm learning a lot about getting older and after a certain age, you may not need to work out as intensely as a 35 year old to get the same result! Good news, right?
I am the same age as you Julie and I experience similar symptoms. I pay closer attention when I walk so I know where my feet are so I don’t trip/fall as often now that I know, but it still happens if I don’t think about my walking. I stay active too as I “never say die”. Lol! One day at a time... do all I can as long as I can is what I keep telling myself!
All the best in 2020 everyone on your own “one day at a time” journey! 
I started to get numbness in my toes 20 years ago, and now have numbness in the whole of my feet. My balance is really bad. I have been diagnosed as a carrier of AMN but have all the symptoms. Unfortunately I have passed this on to my son who is 48 yrs old. I am 72 yrs old and live in North Yorkshire England. Fortunately I have good support from my doctor and neurologist
Any ALD post BMT men or families here?
IS IT X-ALD OR AMN AND ARE THERE SIGNIFICANT DIFFERENCES IN QUALITY OF LIFE?
Stem Cell with AMN
My introduction - AMN
Developing Addison's in 40s
