Hello everybody, first post. Hopefully not the last.
I have lived ten years with AMN. I had my VLCFA test to prove it.
What can I say? It is a long, slow decline. Slow. At least it is slow. At first I took no medicine, I just had foot drop. Tripped up from time to time, then my walking got worse and worse. Seems like I am dragging my right leg about these days.
And the tiredness. I always was tired, but now it is like I have zero motivation to do anything. I feel dead on my feet.
I don’t decent insurance, I live in Mississippi. Still, I see my doctor when I need to. Last time I mentioned my leg and he prescribed Tizanidine. I can’t really say it makes much difference.
Then I mentioned my fatigue, he showed me the door.
I’ve never met anyone else with AMN, didn’t even know this site, but my girlfriend knows a girl who is married to someone from this site, monkey-somethingorother. She registered me and just sent the details. Lucky she did, I’d already forgotten all about it.
I know there is no cure, but I am open to any ideas, chemical or not. Anything that doesn’t break the bank.
Thanks. Talk later.
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sanziggy
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Hi sanziggy and welcome to the club that none of us applied to join.
Having dealt with AMN for ten years as you have, I'd say you are doing pretty well.
As far as dealing with spasticity, Tizanadine and Baclofen are commonly prescribed. I have tried both and, like you, had little benefit. The downside of these drugs is that they also can make your muscles more floppy so I found it's better to put up with the spasticity.
The best thing for dealing with spasticity is stretching and exercise. Exercise warms up the muscles, so they stretch more. But it's an on-going process, so you need to keep doing it. This site has lots on it about exercise and stretching so try the search function. If you need more suggestions please ask.
Fatigue is a different matter. Many AMNers find this hard to get any relief from. Have you had your adrenals checked? If they are not working 100% then that could be a reason.
You don't say if you are able to work.
There are lots of us here on this site and we live all around the world. There may be one or two people near to you in Mississipi. And with Facetime and Skype you can set up a chat with anyone. If you'd like that I'd be happy to volunteer and we can exchange contact details through the private message facility on here.
AMN is not impossible to live with. I've had it for near on 40 years.
I would like to try Provigil but my insurance company denied it for our condition. Does your insurance cover it or did you find a reasonable place to get it?
Insurance companies will cover it if your doctor will list it as narcolepsy, sleep disorder, shift work disorder. Insurances do not know enough about our conditions to approve what will/will not work.
Thank you Chris and Mariagno. Michael - at nearly 31 years of age - thinks there's a magic pill to cure his AMN troubles, and I take heed to your advice on stretching and exercise. I keep avoiding Gadapentin, because he keeps asking for more and more tablets, and none appear do any good. Michael also has cerebral ALD, so you cannot really reason with him, or get any effective feedback from him about the pain relief and Baclofen he is taking. He chatters away all the time, but cleverly goes off at a tangent, when I try to quiz him about specifics!
Our instinct is to minimise the tablets, and the advice I get on this website, confirms this. Michael is lucky enough to be able to walk about 6 steps, and he does his stretching with his Zimmer frame. I also got extension bands from the Lanarkshire Carers, and he is dead keen to use these too for his upper torso. The gym in Lanark may be open soon, and his carers will be able to take him there, but he's exercising a lot at home since his successful treatment at the Physically Disabled Rehabilitation Unit at QEUH Glasgow.
Baclofen helps with spasticity. It's ironic, but through the years I have found regular physical exertion counteracts my fatigue. Harder to do now, but it seems to do the trick. As for motivation it's all between your ears. I am aware I struggle with it, but having a job helps (or something to do for others). Also having people around to pick me up from time to time is great!
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