AMN begins abcd1 gen

[Mateuszpoland]

Hi,

I am 30 years old and was diagnosed 1 Year ago with AMN, wrong abcd1 gen and fortunatelly not so high VLCFA.

All the symptoms has started when I was drunk, saw difficulties with walking. Before I was very active person (running, playing football etc.) Now it all has change.

Right now I am still able to walk, but before I must take shower with hot water and ofc excersise.

Medicine: Baclofen 25mg x2 and pregabalinum x1

Do you have any Advice to the medicine, diet and have any tips to try live normal? Also I have very BiG pane in legs, How can i reduce it?

Thanks

Mateusz

[Hillary]

Hi, I’m a manifesting carrier of ALD. I take pregabalin, but not the generic brand. Lyrica is the only registered Pregabalin for AMN. I have had both, the generic brand is cheaper but I find it does very little for me. Lyrica works wonderfully, I do hope that’s what you are taking

[Mateuszpoland]

Hi Hillary, Thanks for your advice, for sure will discuss taking it with my neurologist, hope that it will bring better results 💪

If anyone has other opinion feel free to leave your opinion 🙂

Thanks

Mateusz

[COwithAMN Administrator AMN EASIER Volunteer]

Hello Mateusz

I am glad that you have found our group AMN Easier. We have been running this forum for many years and so there is a lot of useful information that you can search for to help with AMN.

This disease can be difficult to deal with but for most of us it becomes something we learn to live with. In reality, we have no choice. There are no "cures" yet though of course there are trials in progress (e.g. MIN 102) that may offer hope of slowing down the disease.

I have had AMN for over 30 years now and have gone from being initially a bit wobbly to my present situation. I now rely on an electric scooter to get around while outside and use a Zimmer (walking frame) indoors. I have bladder and bowel incontinence but I can manage these pretty well. I hope you will find that these difficulties won't occur straight away, but there is a lot to help you.

I don't take baclofen or the other antispasticity drugs. I have tried them and they did not produce enough benefit. They also tend to make muscles floppier and less able to hold you upright.

The best advice I can offer is to keep active, keep moving, and keep stretching and exercising the legs. Get a routine you can do every morning in life. 20 minutes is a good time. Eat healthily.

And keep on with your regular life. You sound like a positive optimistic person - that's good!

Do keep us posted here and ask us any questions.

Chris (COwithAMN)

[Mateuszpoland in reply to COwithAMN]

COwithAMN Thanks for the response 👌 show must go one... no other option 😀👍

[Djp1989]

Hi Mateusz, I'm 31 years old and have AMN too. My advice is to stay active. Try to walk as much as possible. Work on core strength and leg muscles.

Couple tools I use that help:

sanddunestepper.com/ theragun.com/

ireliev.com/

I've had the disease for 7 years and still remain very active. I have to use a walking stick most of the time to get around, but I am able to do a lot still. For example, I remodeled my whole basement recently and have a garden I work on. 3 years ago I went to Italy I built up endurance and was able to walk without a walking stick for around 15k steps everyday. Before that trip I could barely walk 10 steps. I really think an active lifestyle helps. But also resting when needed.

Hopefully we see some new treatments coming out soon. Stay strong brother 💪

[Mateuszpoland]

Thanks Man, for the response. Stay active 💪👍 we are in touch, wish you lots of new trips 🤲