Only mildly elevated VLCFA ratio
rfishburn12 days 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_0920 days 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...
Klorda25 days 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
AMNBrazila month 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...
Aaron98a month 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
Travzw2 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_092 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
wilburlois152 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
wilburlois152 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_093 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
bsc783 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. ...
5 Replies3 Likes
Hi, I'm new
tetris3 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
wilburlois153 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
nikolahn4 months ago
5 Replies5 Likes
Looking for no pain with AMN??! I may have found HELP!
mvruggink4 months agoPOPULAR
AMN family! After searching and searching like most all of us have been for sometime! Well last Wednesday I had a Stem Cell treatment done a...
40 Replies4 Likes
The Pain That Never Stops
SongStream4 months ago
For those who suffer with painful neuropathy, here is an article published in New Mobility that I highly recommend. New Mobility is a magazi...
4 Replies2 Likes
Stress and AMN
deengo4 months ago
When I was diagnosed my neurologist I had a very high stress job, that I loved.
my neurologist was adamant about me going in disability. whi...
monkeybus4 months ago
I was at my GP's yesterday to get some Lyrica. He's always full of ideas on what I should do. He doesn't have a clue about AMN though.
Cancer treatment with A m n
gemini23055 months ago
Hi everyone does anyone know if cancer treatment I e chemotherapy would give the same results with a lady carrying the amn/ Ald gene or diff...
Home Office consider allowing cannabis oil prescription for epileptic boy
monkeybus5 months ago
Have you been following this in the news? I have to hand it to the Mum. Cannabis oil is the only medicine th...
2 Replies1 Like
Spinal cord stimulator
Aaron985 months ago
I was recently recommended for a spinal cord stimulator (SCS) implant, as I have failed all conservative pain management attempts (both phar...
5 Replies1 Like
MIN102 trial update
wilburlois155 months agoPOPULAR
Last week I had my baseline session for the trial at NHNN in London. This involved a lot of tests: fasting bloods (started at 7:30am), dista...
32 Replies4 Likes
Air compression leg machine
Seifert_095 months ago
So after much research I finally pulled the trigger and bought this product. Now I’m not trying to pitch any one brand I just went with the ...
7 Replies3 Likes
Verapamil - calcium channel blocker for neuropathic pain?
I saw a new pain management specialist today, and was just prescribed Verapamil to potentially help with neuropathic pain. It is a calcium c...
8month old ALD
Rosita55 months ago
My son was diagnosed at 1 month with ALD. His cortisol levels were checked and his HCT keeps going a little higher than the ACT (I hope I am...
Harlech6 months ago
Hi. Looking at having b/tests by blue horizon, using the home visit service. If anyone has used this service we're you able to get early mo...
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Got to keep moving.
monkeybus6 months ago
Groundbreaking research shows that neurological health depends as much on signals sent by the body's large, le...
11 Replies11 Likes
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