More Gene Therapy News
monkeybus3 hours ago
Alright, it's not AMN related, but some of these gene therapies are getting to be commonplace treatments. Has to be good news for the likes...
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Equinney4 days ago
My first neurologist appointment is today, is there anything that I need to have her check other than for lesions (especially cranial) and a...
MIN-102 trial: 24-weeks
nikolahn5 days ago
6 minutes walking check - have passed 20 meter more than the previous check in October. The overal subjective health state same as at the be...
6 Replies4 Likes
Equinney7 days ago
Does AMN make you feel tired easily? Sorry for all the questions.
New to AMN
Equinney11 days ago
I had to leave work (assembly line) at the end of September due to extreme back pain that was wrapping around my chest. After 2 months I was...
Low dose naltrexone
Aaron98a month ago
I wanted to ask if anyone has any experience taking LDN. I believe I remember monkeybus taking it a couple years ago, but never heard any re...
monkeybusa month ago
Fellow AMN sufferers.
I have said this before, but I'll post one more time.
Why don't we do a crowdfunding to send one of us to Panama for som...
2 Replies1 Like
Does anyone with AMN suffer with painful joints I am 61 year old female diagnosed 5 years ago
spaldinga month ago
ALD diagnosed 5 years ago have a few walking problems and arm problems
1 Reply1 Like
Neuro regeneration, stem cells
Royal jelly research could propel cure for Alzheimer’s, claim scientists
Royal Jelly. This is interesting.
wilburlois152 months agoPOPULAR
Last week I had my 24-week update for the MIN-102 trial at NHNN in London. It was the usual early start with fasting bloods. The...
24 Replies7 Likes
Cbd oil/ capsules
jordlee212 months ago
Has anyone tried taking these to help with AMN?
deengo2 months ago
Does anyone else have high cortisol levels? I get tested for A.M. cortisol twice a year and it's always above normal. Also my ACTH is very h...
New brain lesion
monkeybus2 months ago
Nine months since my last MRI and I went for my latest result today. Big lesion on my left frontal cortex. Take a look, folks. Big white ...
Only mildly elevated VLCFA ratio
rfishburn2 months ago
I'll make this quick, I'm hypo pituitary with addisons. My sleep doctor is a neurologist and to get a refill on my provigil I had to come in...
Seifert_093 months ago
I would like to know what antidepressants the group has used with the best results. I know we all react differently to meds I’m just curiou...
Klorda3 months ago
I am a female, age 57, and have been diagnosed with AMN. I have balance and gait issues and neuropathy in my legs. Is there any medicatio...
ALD in 1986 and AMN 2018
AMNBrazil3 months ago
My name is Rodrigo, a Brazilian with 44 years. I was diagnodes with a milder ALD phenotype in 1986, after my younger brother diagnose of chi...
Aaron983 months ago
Apparently, there is a fludrocortisone shortage in the US right now. Teva has put a hold on manufacturing any more of this medication. I've ...
Stem cell update?
I know that a few of our members have received stem cell therapy this year. I am sure we would all be interested in hearing an update of you...
1 Reply2 Likes
Travzw4 months agoPOPULAR
Hi. Just wanted to ask the ones that are currently on the Min-102 trial if they’ve seen any improvements. I am in the US and talked to the c...
Seifert_094 months ago
Hey everyone just wanted to get some feedback. Going on three weeks now I have been unable to sleep more than 3 hours. As a result I feel li...
MIN-102 water retention
wilburlois154 months ago
Apologies for the picture of my lower leg but this is what it looks like nowadays after I have taken my socks off. The sock elastic squeezes...
6 Replies3 Likes
Looking for feedback on Klonopin taper. I’m looking to stop the Klonopin as I feel it’s not helping that much anymore. Do any of us have ex...
MIN-102 trial: 12 week update
wilburlois154 months agoPOPULAR
Last week I went back to NHNN in London for the 12-week update. It was a long day starting with fasting bloods at 8am, breakfast and then th...
29 Replies7 Likes
So I just found out I have brain lesions and am really kind of lost and scared . To those of the group that have lesions what is to be exp...
Seifert_095 months ago
I would like to know if the group experiences panic attacks. I am going through some very difficult family problems right now and have ben h...
ALD Connect Annual Meeting
bsc785 months ago
For those of you who may be interested, ALD Connect is hosting its annual meeting/patient learning academy in Philadelphia, PA on Nov 2-3. ...
Hi, I'm new
tetris5 months ago
My name is Zach. Addison's was confirmed 4 days ago and AMN was confirmed (from a VLCFA test) 2 days ago.
Edit: And I'm in Lawrence, KS, USA.
15 Replies2 Likes
wilburlois155 months ago
Hi everyone. I'm now about 10 weeks into the trial. I'm reasonably sure I am on the medication and not the placebo. Firstly my ankles swell ...
7 Replies4 Likes
I am in
nikolahn6 months ago
5 Replies5 Likes
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