Seifert_093 days 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
wilburlois153 days 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...
3 Replies2 Likes
Seifert_097 days ago
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...
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MIN-102 trial: 12 week update
wilburlois1516 days ago
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...
12 Replies4 Likes
Seifert_0918 days ago
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_09a month 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
bsc78a month 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. ...
2 Replies3 Likes
Hi, I'm new
tetrisa month 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.
13 Replies2 Likes
wilburlois15a month 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
nikolahn2 months ago
5 Replies5 Likes
Looking for no pain with AMN??! I may have found HELP!
mvruggink2 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...
39 Replies4 Likes
The Pain That Never Stops
SongStream2 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
deengo2 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...
monkeybus2 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
gemini23053 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
monkeybus3 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
Aaron983 months ago
I was recently recommended for a spinal cord stimulator (SCS) implant, as I have failed all conservative pain management attempts (both phar...
3 Replies1 Like
MIN102 trial update
wilburlois153 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_093 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?
Aaron984 months ago
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
Rosita54 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...
Harlech4 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...
Got to keep moving.
monkeybus4 months ago
Groundbreaking research shows that neurological health depends as much on signals sent by the body's large, le...
11 Replies11 Likes
First Time Leg Stiffness
KennyInPA4 months ago
So far on my AMN journey my legs have been fairly manageable with no issues with stiffness or spasms. I've been finding myself waking up a...
Fatigue is kicking my arse!
Seifert_094 months ago
All jokes aside this fatigue thing is really starting to worsen. Now I do take Modafinil but lately it has not had the same effect. I’m here...
monkeybus4 months agoPOPULAR
Just received this email:
Dear Mr Monkeybus,
Our team was informed that you are interested to participate in the above clinical trial.
To be ...
20 Replies1 Like
Hello from a new user!
Cambridge_Chris4 months ago
I am relatively new to the site, and just wanted to say a quick 'hello' to everyone here, and say that I've found it very helpful to look t...
3 Replies3 Likes
Electronic Muscle Stimulation
Modjeskatim4 months ago
I am new to this site so forgive me if this is a topic that has been discussed already. I am interested if anyone has tried Electronic Musc...
In my continuing quest to find some relief from the intense neuropathic pain in my feet and lower legs, I had been considering acupuncture f...
spalding4 months ago
Suffering with severe lower back pain am struggling to get out of bed in morning when up and moving it eases a bit got MRI tomorrow is this ...
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