33 with AMN - Introduction
KennyInPA5 hours ago
*No, I'm no Britney! Haha
I stumbled upon this great community tonight and just wanted to introduce myself. My name is Ken and I am 33 from...
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spalding13 hours ago
Does anyone suffer with cramps in whole of legs especially at night keeping me awake
Looking for support from others dealing with ALD/AMN
skirbya day ago
My brother and my mother both began having problems (mostly with walking) around 15 years ago. They were diagnosed with Hereditary Spastic ...
Neuropathy or AMN?
Klordaa day ago
I always thought my father had MS. We now know he must've had AMN. He died 40 years ago. My sister walks just like he did and my nephew i...
Piracetam, 4-AP, spasticity, myelin, constipation.
monkeybus10 days ago
I have mentioned Piracetam several times before. I first tried it just for the hell of it. I’d taken it way, way back when I was in Univer...
2 Replies3 Likes
Lenti-D investigational gene therapy in boys under 18 years old results.
monkeybus11 days ago
About the Starbeam (ALD-102) Study
The Starbeam Study is assessing the efficacy and safety of an investigational gene therapy in boys up to 1...
1 Reply3 Likes
Electricity, the mother of all medicines
monkeybus13 days ago
Could electrical implants replace pills for some illnesses?
I've been banging on about TENS/FES, and the like ...
New Here. Elevated VLCFA, Possible AMN. California Surfer
samcsurf1713 days ago
Hi Everyone! I'm new here. My name is Sam and I'm a 27 year old surfer from Southern California. Anyways, my (possible) AMN story starts abo...
I have had 4 Adrenal Crisis' this year
KeithS17 days ago
Is this a record?
Until the 3rd episode in early July I didn't actually realise what was happening. I have always been wiped out with a 'flu ...
9 Replies1 Like
Another 4-AP, 4-AP-3-MeOH study
monkeybus21 days ago
Dated August 2016, which I suppose is fairly recent.
Here are a few choice excerpts:
4-AP has been investigated ...
3 Replies7 Likes
4-AP improves motor function in patients with AMN
Has this already been posted?
I'm doing this on my phone, and I've just lost the link. I'll edit this on my PC later.
Still, an actual clini...
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dryder22 days ago
ALD connect is another great resource. The researchers have come together here. You will find resources and they hold phone conferences wit...
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Michael Conway - Adrenoleukodystrophy (ALD)
MichaelConway24 days ago
Dear HealthUnlocked - My name is Michael Conway and I have Adrenoleukodystrophy (ALD). I have trying to raise awareness of this condition by...
10 Replies3 Likes
Where did the hole come from?
countofstgermain24 days ago
I tell a lot of crazy stories when people ask why I am in a chair. My favorite is, That all of our Great great greatgreat great .... grandmo...
1 Reply5 Likes
Hillarya month ago
I'm looking for support, which I know I will get, but also asking if anyone else has any info or advice. I have recently gone ...
10 Replies1 Like
Nerve fibers regenerated with molecular mix
monkeybusa month ago
This is excellent news, includes a scientific test of 4-AP-3-MeOH as well.
Scientists may have found a way to regrow axons - a crucial part o...
4 Replies5 Likes
SongStreama month ago
My intent is not to be negative but provide an outlet for us all who experience some days that are worse than others and to share our life's...
14 Replies4 Likes
I was sick and tired of lumbering about on the crutches I bought from Amazon.
And I bought mid-range, moulded hand grips, etc.
But, every step...
5 Replies3 Likes
Seifert_09a month ago
So I have now taken both 4-ap and 4-ap-3-meoh. In my experience I have found that the 4-ap barely even helps and in some cases makes my legs...
2 Replies2 Likes
Justice (of sorts)
monkeybus2 months ago
Have you all been following this:
Martin Shkreli found guilty of fraud by jury in New York
He raised the price ...
Deadly gene mutations removed from human embryos in landmark study
Crispr in action.
“This embryo gene correction method, if proven safe, can potentially be used to prevent tra...
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Muscle tightness in the morning.
I have quite tight muscles in my arms/hands. I stretch throughout the day (whenever I remember to). So far, so normal.
But lately, when I w...
Gene editing, Crispr and the hell that awaits.
This article purports to be about cancer, but is relevant to us.
I recall, it was, I think, 20 years back, Prin...
Legalise cannabis as treatment of last resort for MS, says charity
MS Society says there is sufficient evidence of drug’s effectiveness to relax ban for patients with no other options
Kennedy Krieger Leukodystrophy Clinic
Aaron982 months ago
My wife and I have plans to travel across the country to Baltimore to see the specialists at Kennedy Krieger. On their leukodystrophy clinic...
7 Replies1 Like
ggallsup2 months ago
My brother and I both have AMN, I was diagnosed 4 years ago and have the classic type, spasticity and addisons. My brother who is 7 years yo...
Lifestyle changes could prevent a third of dementia cases, report suggests
Alzheimers runs in my family, so th...
How mobile are you?
Yojo2 months ago
Hi just wondering how mobile everyone is with this and how they cope getting about. What activities do you do? Looking for suggestions as my...
Severe congestive heart failure caused by adrenomyeloneuropathy and hyperthyroidism
Here is one to cheer everyone up. As if we didn't have enough to worry about.
3 Replies1 Like
Hidden herpes virus may play key role in MS, other brain disorders
COwithAMN2 months ago
This piece of science news is interesting to me because it's a different take on demyelinating diseases. It could also have very practical ...
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