monkeybus12 hours ago
This is good.
I posted a while back about tauroursodexychloic acid slowing/stopping axonal degeneration.
A foray into plant biology ...
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Stem Cell with AMN
mvruggink3 days ago
I am new to this website and I am located in the US. My mother's whole side of the family is experiencing neuropathy in the legs. I a...
New blog page for women
Travzw13 days ago
Good afternoon. Someone commented that I should include information for women with AMN on my blog. I have created a new page solely for wome...
Soles of feet
spalding18 days ago
Does anyone suffer with pain in soles of feet and when you try to stretch feet up or down it feels like something is pulling and stretching ...
Spasticity/spasms and hydration
monkeybus19 days ago
So last week I had some sort of virus. The long and the short of it was I was in bed for 48 hours, hadn't ate or drank for that long.
6 Replies1 Like
Travzw21 days ago
Hi guys. I’m working on a blog if you would like to check it out.
It’s a work in progress still so bear with me.
Seifert_0925 days ago
I would like to know what the collective levels of ACTH are . When I first started seeing my endocrinologist my numbers were 103,193,196. Th...
DIY Gene Therapy
monkeybusa month ago
Well, this was only a matter of time.
I have posted several times about Crispr gene therapy racing ahead, all sorts of diseases cured (maybe)...
Seifert_09a month ago
Just trying to get a feel for what some are doing.
I have been having some tough times with mood lately and could use some feedback. Any and ...
19 Replies1 Like
Hot Tubs and AMN
KennyInPAa month ago
Does anyone have any experience with hot tubs and AMN? I was recently on vacation and came down with food poisoning and was in my room rec...
Travzwa month ago
Within the last few months I have been diagnosed with lymphedema. I have been dealing with swelling from my knees down to my toes since the ...
Cranial Electro Stimulation (CES)
I think I posted about this before.
Cranial Electro Stimulation (CES) is the business of passing an extremely low ampere electrical current t...
2 Replies1 Like
Yet another gene editing breakthrough.
Deafness has been prevented in mice using gene editing for the first time, in an advance that could transform future treatment of genetic he...
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COwithAMNa month ago
Did that post heading make you react? It wouldn't be surprising.
Dealing with bladders and bowels that refuse to behave the way they used to ...
15 Replies2 Likes
Another MRI pic
Here is the thing, and it is a shame we can only post one pic per post.
Anyway, see in the centre of this image? That is my brain stem. My ...
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MRI Result. All clear.
I was worried. Noticed a lot of mistakes as I type. All sorts of minor things.
Surely I was developing ALD.
But no. I am in the clear.
11 Replies7 Likes
MIN-102 clinical trial
Aaron98a month ago
Does anyone know anything about this clinical trial? Apparently it was originally set to begin in October, but hasn't even begun recruiting ...
Aaron982 months ago
My legs spasm frequently throughout the day and night. If I get an itch in my leg, before my brain is able to process that I need to reach d...
Andrew-4322 months ago
I am just wondering if anybody else as the same symptoms as me I am 56 with AMN. I think I have restless leg syndrome as they keep twitchin...
Looking of some help for a cousin with AMN
KumarVipan2 months ago
Hi everyone -
I am new to this post so please forgive me if i am asking a question that has been already answered.
One of my cousin in India h...
Fitness and muscle spasms
nikolahn2 months 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.
monkeybus3 months 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?
amytrigspencer3 months 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
nikolahn3 months ago
One benefite is clear.
Pressing the clutch pedal problem is gone.
A reason to celebrate.
2 Replies5 Likes
AMN and Leukodystrophy
nan173 months 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 ...
Any experience with propolis?
ggallsup3 months 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
Yhen3 months 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
wilburlois153 months ago
Treatment with VK0214 led to Significant Reductions in Plasma and Tissue Levels of VLCFAs
Good news. ABCD2 making steady progress......
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