monkeybus4 days ago
Lifestyle changes could prevent a third of dementia cases, report suggests
Alzheimers runs in my family, so th...
How mobile are you?
Yojo7 days 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
monkeybus8 days ago
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
COwithAMN13 days 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 ...
1 Reply2 Likes
monkeybus13 days ago
Well, here we go.
We may be able to add to this as and when.
"In conclusion, acupuncture could be effective in...
Walking downhill improves MS (and presumably our) symptoms.
This in interesting.
"Researchers found that aerobic downhill walking on a treadmill (eccentric exercise) is mo...
Seifert_0913 days ago
Does anyone know if mod4 has gone off line again ? I have not had any success with any of my emails to them.
bxd1114 days ago
It took 2 and a half years to diagnose. I had a constant headache. At one point I was completely numb. I was dizzy and light headed. Iregul...
bluejadedwho15 days ago
I'm pretty sure someone has posted about this before however I came across it again and this article is from 2016. I can't find a lot of inf...
Something for the future?
COwithAMN15 days ago
"Vitality Biopharma Inc filed an international patent application in March of 2017 that describes compounds discovered to be effective in a ...
6 Replies2 Likes
bluejadedwho17 days ago
Does anyone know how to get a hold of the member Robsupernova? He had some amazing theories years ago which I now finally understand through...
Circadian rhythm misalignment in people with adrenal insufficiency
Aaron9825 days ago
It's been quiet here. Everyone must be enjoying the summer. We certainly are. My wife and I have a few big events coming up in the next few ...
Laughing Gas Destroys Myelin
monkeybusa month ago
I saw on the news about the French lady who was killed when a whipped cream cannister exploded and hit her heart.
8 Replies1 Like
The parents of a severely ill baby who believe he should be taken to the US for alternative medical therapy have made an emergency appeal.
Have any of you been following this?
Heartbreaking stuff, maybe related to us.
I'd never heard of nucleoside...
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Podcast Session: "Living with AMN – A Clinical & Research Perspective”
SongStreama month ago
From the AMN RareShare Community:
We are proud to invite you for the upcoming podcast session discussing:
“Living with Adrenomyeloneuropathy ...
9 Replies1 Like
ALD Breakout Session Call AMN Men - June 13th
I've posted this in another online community and thought it might be helpful for others in the states or across the pond if you're able to m...
Repeated urine infections
spaldinga month ago
Does anyone know if AMN gives urine infection keep getting them going to have camera tests to see what is going on
Medications to manage neuropathic pain
Aaron982 months ago
It's been a bit quiet on this forum recently. Everyone must be enjoying the spring.
I've written a fair amount about my neuropathic pain in t...
6 Replies1 Like
Increased production of urine from Addison's?
Clodvig2 months ago
I was just wondering; if you have AMN and also Addison's disease, is there a tendency that you produce more urine than a healthy guy? The ad...
monkeybus2 months ago
From the United Leukodystrophy Foundation.
Developed for cancer, but promises to treat neurological disease-a-p...
Be the first to reply1 Like
Umbilical cord blood could slow brain's ageing
Here we go...
Scientists have reversed memory and learning problems in aged mice with infusions of a protein fo...
4 Replies1 Like
Huntington's Disease, the Pope.
Alright, it isn't our disease, but like a lot of stuff I post this is tangentially related.
It all goes to show...
Myself, my brother, differences in symptoms.
I am a firm believer in the AMN creeping up slowly from birth. Onset in 4th decade means a slow creep. Childhood ALD a quicker one.
The power of placeboes
‘I knew they were sugar pills but I felt fantastic’ – the rise of open-label placebos
My toe hurts. Not found ...
1 Reply1 Like
Flooring for neuropathy
Sdlizlem2 months ago
If you have neuropathy in your feet, do you have unique solutions on types of flooring to put down? I'm moving to a new apartment and I'm t...
Sue952 months ago
I have prominent veins in my feet, like varicose veins (though my legs are OK) and my feet are prone to swelling, particularly later in the ...
nevergiveuphope3 months agoPOPULAR
Hi I was wondering if there were any statistics available on developing ANN later in life if a BMT was done as a child for ALD. Thank you
Seifert_093 months ago
Fellow AMNers I would like to know what your experience with lyrica has been. I've read almost too many threads that have likened it to eit...
jordlee213 months ago
Has anyone tried taking Mirabegron to help with incontinence? Also has anyone experienced any side effects from these talets? thanks.
Cold legs and Amn
spalding3 months agoPOPULAR
Hi I'm new to this was diagnosed with AMN 3 years ago does anyone else feel like their legs are cold all the time even tho to touch they are...
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