Hello I'm Angela

Tell us about yourself. A little or a lot, it is up to you. How is this disease affecting you? How are you coping?
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AngieB
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Joined: Fri Oct 25, 2019 11:29 am

Hello I'm Angela

Post by AngieB » Tue Oct 29, 2019 1:02 pm

Firstly, thank you for taking the initiative in building this site, I'm sure it's going to be extremely useful. I'm 61, I have AMN and have been symptomatic for about 7 years. It's getting progressively worse and I now walk with a stick. I live in Devon (originally from London) I was discharged by my neurologist in Devon as he said there was nothing that could be done for me. I found a brilliant neurologist at the The National Hospital for Neurology and Neurosurgery who I now see once a year. I also see the physios there once a year and they have fixed me up with a FES which is great. I'm due to have a bone scan as I've been told that osteoporosis is a possibility with AMN, I'm also due to see a urologist that specialises in people with neurological conditions. I'm so glad I didn't accept the word of the first neurologist that nothing could be done for me. I think I'm pretty lucky, in that I'm still quite mobile and I put that down to going to the gym about 4 times a week and keeping my muscles strong. I know it's not easy for everyone with AMN, but for me it's the key to keeping mobile. I struggle and hobble in there with my stick and walk round holding on to equipment for balance, when I've finished my workout my mobility has improved significantly. I'm self conscious but it doesn't last, everyone there knows me and are really supportive, I definitely recommend it. I don't take any medication, only a magnesium supplement for spasms and paracetamol for pain, I tried Baclofen but it didn't really do anything for me except I put on a ton of weight. I tried AP-4 (Fampyra) that I got from mod4all (thanks MonkeyBus for giving me the details), it made me so dizzy and weird, I only took it once, does anyone know if my body will get used to this side effect in time? Got to keep positive, I've been watching Unnatural Selection on Netflix (another MonkeyBus recommendation!) about gene editing, it's amazing what's in the pipeline, let's hope it's in our lifetime.

dino
Posts: 3
Joined: Sun Oct 27, 2019 8:57 pm

Re: Hello I'm Angela

Post by dino » Tue Oct 29, 2019 8:09 pm

Hey, Angela.

What is an "FES?"

Thanks,

Dean

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monkeybus
Posts: 14
Joined: Fri Oct 25, 2019 3:08 am
Location: London
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Re: Hello I'm Angela

Post by monkeybus » Wed Oct 30, 2019 4:32 am

Hello, Angela,

Thanks for the kind words. I am, indeed a great, kind man.

I plan on doing a write up of my opinions/experiences of umpteen AMN drugs.

Baclofen just made me tired. Helped my walking in the sense that I was so stoned, I took my time shuffling about, no really caring.

Not medical advice, but 4-AP has to be worth a proper go. If only because it actually helps you walk. The only drug clinically proven to help alleviate spasticity.

Made me feel a bit sick/dizzy at first, I gave up on it, then I couldn't resist having another go. That was about five years ago, I have never looked back.

Most people get it from online pharmacies, especially outside the USA. I want to arrange an interview with the mod4all people about 4-AP, where they source it from, etc. Watch this space.

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monkeybus
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Location: London
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Re: Hello I'm Angela

Post by monkeybus » Wed Oct 30, 2019 4:45 am

Hello Dean,

FES, Functional Electrical Stimulation.

Have a look:

https://www.vlcfa.org/viewtopic.php?f=64&t=15

I'll do a proper write-up later.

Welcome to the site, by the way.

Later.

derevlesruTouraMG
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Joined: Mon Mar 09, 2020 7:57 pm
Location: Россия
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Post by derevlesruTouraMG » Sat Apr 24, 2021 5:01 am

Hello Im Chris from Rosenheim.
I found this Forum over the NMB and register today to discover this board.
I see a lot of well known Users here.

Best
Chris

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