Posts - AMN EASIER | HealthUnlocked

AMN EASIER

1,312 members • 1,165 posts

All posts for March 2019

Genetic testing woes

I saw my neurologist for my bi-annual checkup last week. I asked him about having genetic testing done to find out my mutation signature. For the record, I...

I saw my neurologist for my bi-annual checkup last week. I asked him about havin...

•5 years ago

More ideas.

As you are very well aware by now I am all up for mobility and independent living. I use a wheelchair 99% of the time as walking is dangerous, often painful...

As you are very well aware by now I am all up for mobility and independent livin...

•5 years ago

A source of confusion.

This is true of everyone, not just AMN sufferers, I experienced it in real life. When I suggest getting a wheelchair, you don;t have to use it 100% of the...

This is true of everyone, not just AMN sufferers, I experienced it in real life....

•5 years ago

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Life expectancy.

So having read posts here over the last few weeks, I see stuff from people my age who have been suffering since their 20's and posts from people who started...

So having read posts here over the last few weeks, I see stuff from people my ag...

•5 years ago

Wheelchairs

I said I was gonna do a post about my quad. But wheelchair first! So I have attached a photo of my totally customised wheelchair, which suits my needs...

I said I was gonna do a post about my quad. But wheelchair first! So I have att...

•5 years ago

ALD Connect Announcements

Please help spread the word: We are excited to announce that the first set of ALD Connect Community Calls will be starting next week! Our first three calls are...

Please help spread the word: We are excited to announce that the first set of AL...

•5 years ago

How to beat AMN.

So I arrived here not so long ago and I posted a few times. I have ruffled some feathers, but I think this is normal. I hope to represent the new generation of...

So I arrived here not so long ago and I posted a few times. I have ruffled some ...

•5 years ago

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Awesome car for sale.

Its got to the point where I needed to get a car with hand controls. I bought another car rather than installing them on this one. But it means my DODGE BRAUN...

Its got to the point where I needed to get a car with hand controls. I bought an...

•5 years ago

Help être votre femme ou mari ou comment vivre avec un(e) amn ?

Bonjour voilà je me lance je suis depuis fin février sur le groupe je lis les posts avec beaucoup d'attention dans l'espoir d'y apprendre toujours plus et...

Bonjour voilà je me lance je suis depuis fin février sur le groupe je lis les po...

•5 years ago

Me and My New Legs

I woke up one morning and was determined to get "the wheel(power) chair of my dreams which meant the Whill Ci: http://whill.us/model-ci/ Because I do not...

I woke up one morning and was determined to get "the wheel(power) chair of my dr...

•5 years ago

Probably unjustified. But got my goat.

So a fella contacted me on facebook yesterday claiming to suffer "ALD" and in his fifties been suffering for like 2 or 3 years. I told him its a shame he...

So a fella contacted me on facebook yesterday claiming to suffer "ALD" and in hi...

•5 years ago

Old friend, new enemy

So back in the day, I was a chef. Like a proper chef, not a microwave jockey. And like many chefs I used to love a beer after knocking off, sometimes in the...

So back in the day, I was a chef. Like a proper chef, not a microwave jockey. An...

•5 years ago

Silly, but serious.

Yeh, ok so we all suffer various levels of AMN. If you are anything like me you have super heavy legs. Feet stuck to the floor, and the toes all worn off on...

Yeh, ok so we all suffer various levels of AMN. If you are anything like me you ...

•5 years ago

Gabapentin & Pregabalin

My wife ran across this. So far this and Baclofen are the only drugs that have been prescribed for me. As if we don’t have enough problems....

My wife ran across this. So far this and Baclofen are the only drugs that have b...

•5 years ago

Gene Therapy

https://clinicaltrials.gov/ct2/show/NCT03852498?term=bluebird+bio&rank=6 We ain't eligible for this one, below 17yo only, but this gene therapy trial looks...

https://clinicaltrials.gov/ct2/show/NCT03852498?term=bluebird+bio&rank=6 We ain...

•5 years ago

More controversial medication. I still don;t care if you are anti.

I sent this in a private message to someone, but I think it should go here too. I have been a true medical cannabis user since 2014, but more like 2010 in...

I sent this in a private message to someone, but I think it should go here too. ...

•5 years ago

Medical Marijuana

https://www.nhs.uk/conditions/medical-cannabis/ I was back home in the UK recently, popped over to France (with it's notoriously strict drug laws), have to...

https://www.nhs.uk/conditions/medical-cannabis/ I was back home in the UK recen...

•5 years ago

Pregabalin & Gabapentin

Hi everyone, i thought this was worth sharing. I only saw this myself today on Facebook.

Hi everyone, i thought this was worth sharing. I only saw this myself today on F...

•5 years ago

Wheelchair shaming

I am still a new member here. I posted twice about wheelchairs so far and had negative responses both times. I found this in real life too especially from...

I am still a new member here. I posted twice about wheelchairs so far and had ne...

•5 years ago

ALD Connect Announcement and Support Calls

I had no idea today is Rare Disease Day. However, for those in the United States, please contact your member of Congress to pass newborn screening in ALL...

I had no idea today is Rare Disease Day. However, for those in the United States...

•5 years ago

Ustep2 walker

This is the walker/rollator I was talking about. So far I love it. It is designed for neuro patients. The only drawback I have found is that it takes up a...

This is the walker/rollator I was talking about. So far I love it. It is design...

•5 years ago

Carrier and trying to start a family

Hi everyone. I'm new here. I'm a female carrier who found out a few years ago when I lost my dad to AMN. I was fortunate to have found out prior to thinking...

Hi everyone. I'm new here. I'm a female carrier who found out a few years ago wh...

•5 years ago

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At my wits end(sex and anorgasmia related post)

Hello, everyone, I want to consult, amn patients sexual dysf...

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