Fitness and muscle spasms
nikolahn14 days ago
After two years of fitnessing I have forgotten my muscle spasms. Spasms are happening now rarely and with a low intensity.
On more entry in...
15 Replies5 Likes
Marijuana for spasticity, muscle spasms, pain.
monkeybus15 days ago
I used to love smoking dope, once was a time when I couldn't imagine life without it. I was unaware of my AMN, And though I was all for le...
9 Replies4 Likes
AMN - Psychological Issues?
amytrigspencer20 days ago
My husband was diagnosed with AMN about 7 years ago. He's having the typical physical symptoms, but he's also suffering from crippling anxie...
Two fitness years closed
nikolahn24 days ago
One benefite is clear.
Pressing the clutch pedal problem is gone.
A reason to celebrate.
2 Replies5 Likes
AMN and Leukodystrophy
nan17a month ago
I've gotten more confused than ever! My metabolic specialist just told me I have AMN and I don't have Leukodystrophy. I thought AMN was a ...
nikolahna month ago
Any experience with propolis?
ggallsupa month ago
Hello all. I know bladder problems are an issue for us AMN'ers. I have problems with urgency and also initiating flow. Does anyone else have...
MD 1003 Medday pharma
Yhena month ago
Does anyone have an idea about the results of the MD1003 (High Dose Pharmaceutical Grade Biotin) trial done by Medday Pharma??
Viking Therapeutics Announces Top-Line Results from Proof-of-Concept Study of VK0214 in In Vivo Model of X-Linked Adrenoleukodystrophy
wilburlois15a month ago
Treatment with VK0214 led to Significant Reductions in Plasma and Tissue Levels of VLCFAs
Good news. ABCD2 making steady progress......
Allergy drug improves function in patients with chronic injury from multiple sclerosis
COwithAMNa month ago
Some have you may have spotted this trial result already. It came out a few weeks ago and is reported (as one example) here:
3 Replies1 Like
Exciting study take two
Catherine62a month ago
oops. Somehow I posted the wrong article.
2 Replies1 Like
Did everyone see this?
Be the first to reply1 Like
mariagno2 months ago
I think I have missed over the years, many of the vitamins and supplements that people have taken that have more than anecdotal evidence.
14 Replies1 Like
spalding2 months ago
Am totally confused have had lots of tests on bladder camera test urodynamic testing consultant said all looked fine let I still feel bladde...
monkeybus2 months ago
CRISPR keeps progressing, this time in China.
'Chemical surgery' used to mend harmful mutations in human embryos
Lyrica changed to a generic pregablin.
Cherie2 months ago
Has anyone else been changed from Lyrica to a generic pregablin medication. I was changed to Lecaent and I have had a teribble week with not...
6 Replies2 Likes
Electrical brain stimulation
Have a read of this, folks.
Here is a cut/paste...
‘Now he is more aware’ – A man in a “persistent vegetative st...
Be the first to reply2 Likes
kimmy2 months ago
Don't know if this is a silly question or not but my son was diagnosed with ALD when he was 10.... He's now 27 so does he now have adult ALD...
7 Replies1 Like
CRISPR Gene Editing
CRISPR research is powering ahead.
Here, they have deactivated a gene called OCT4.
Just a matter of time, though...
Be the first to reply
2017 ALD Connect Annual Meeting & Patient Learning Academy
bsc782 months ago
The only conference dedicated solely to ALD is going to be held in Bethesda, MD on Nov 17-18, 2017. This is a great opportunity to meet oth...
33 with AMN - Introduction
KennyInPA2 months 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...
11 Replies1 Like
Does anyone suffer with cramps in whole of legs especially at night keeping me awake
15 Replies1 Like
Looking for support from others dealing with ALD/AMN
skirby2 months 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?
Klorda2 months 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.
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.
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
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
samcsurf172 months agoPOPULAR
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
KeithS3 months 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 ...
16 Replies1 Like
Another 4-AP, 4-AP-3-MeOH study
monkeybus3 months ago
Dated August 2016, which I suppose is fairly recent.
Here are a few choice excerpts:
4-AP has been investigated ...
3 Replies7 Likes
Start a Community