Aaron985 days ago
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...
spalding7 days 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 ...
Hello. First Post.
hvaan8 days ago
Just registered on this site, I was given my genetic test result last week and the nurologist then confirmed I had AMN. VLCFA blood test w...
Spasticity (again) , constipation (again), fatigue (always).
monkeybus11 days ago
It's always the same, much like my posts, but I'll say this again.
About two weeks ago my spasticity was through the roof. Off the scale. ...
11 Replies2 Likes
Addison’s disease AMN and COQ10
Abdallahomari7922 days ago
I have addison’s disease since childhood. Is it ok to take COQ10. What dosage would anyone recommend daily. I am over 38 years old now
Botox injections in legs
Aaron9824 days ago
Hello all, I hope you are well. This week I saw a neuro-rehabilitation specialist in Seattle for the first time. She wasn't able to give me ...
Laird_Maca month agoPOPULAR
I started showing visible signs of AMN when I was 21 and am currently experiencing a constant, stiff aching pain in my legs from mid thigh d...
Carrier of Addisons diease
Hidden2 months ago
Hi my name is Shinae I’m a carrier of addisons diease just would like to know what does this mean do I have the addisons diease or just the ...
Baclofen and AMN
Abdallahomari792 months ago
or is this a sign of AMN deterioration?
AMN AND BACLOFEN WITHDRAWAL
I have terrible aches in my head, I feel like my bones in my brain are aching. Is this related to baclofen. Anyone went through a similar ...
deengo2 months ago
this might be real short notice to get any replies but I'm going to see my neurologist for my (past due) check up. i haven'tseen her since 2...
Flu 2018 sping
nikolahn2 months ago
Three weeks flu. One week out of work. Three weeks with crutches. Not violent but persistent.
Next week hopefully back to fitnessing.
Be the first to reply
Good news and bad
Aaron982 months agoPOPULAR
I just received my second denial letter from SSDI for disability benefits. The disability attorney that I am working with tells me that this...
22 Replies1 Like
Is there anyone going to the ALD meeting in London in May who can give a lift to a friend?
Cherie2 months ago
I have a friend who would like to come but doesn't feel able to drive there or use the underground. She lives near Leighton Buzzard or can g...
New clinical trial.
monkeybus2 months ago
I'd sign up for this if I had the time.
Enrolling now. Looks promising.
15 Replies1 Like
What say, folks? Shall we all register and plot ourselves around the world?
17 Replies3 Likes
More Crispr news
Scientists on brink of overcoming livestock diseases through gene editing
Be the first to reply1 Like
I'm incredibly lucky, in that my insurance is so good. I can get as much data as I want.
I wasn't really paying attention before, but now I ...
Be the first to reply2 Likes
Pulsed Electromagnetic Field Therapy
StevenSims has mentioned Actipatch before now.
This is a PEMF device.
I have posted before about electro medicine. A lot of solid scientific...
1 Reply1 Like
Had the results of my latest MRI today.
I didn't even know what a Loes score is.
0.5/34, that's me.
How about you lot?
6 Replies1 Like
Vitamins and supplements
I also take B12 Neuroboin and 1000 IU vitaminD3, and omega3 VitaminE supplement.
4 Replies1 Like
Sorry for my terrible English, but remember that English is not my mother tongue. But I read it quite well. I also read French and German, ...
Be the first to reply3 Likes
Struggling with Returning Persistent Neuropathic Pain and Spams.
SongStream2 months agoPOPULAR
Last month, I met a specialist in physical medicine to address my unrelenting neuropathic pain and spasms as baclofen was no longer respondi...
21 Replies2 Likes
Oral Baclofen and COQ10
I was wondering if oral Baclofen and COQ10 interact and cause terrible side effects ?
Habits and food
bilingual2 months ago
Hello, I was wondering if you are following some kind of special diet that helps to alleviate the symptoms or that can help in general to pa...
Seifert_092 months ago
Needs some experience stories.
I am now prescribed this by my neurologist. So far all I can tell is I’m getting some headaches and what I thi...
Desperately in need of any helpful suggestion.
Does anyone strongly recommend Cerluten. I have been on Baclofen since last year and i am very sick and weak and my gait is worse. I hav...
SI Joint Pain
bluejadedwho3 months ago
Does anyone else have or are suffering from SI joint pain? I’ve been in terrible pain for the last 10 months. The pain is prominent in a sm...
Crispr gene editing ready for human trials.
monkeybus3 months ago
I've posted about Crispr before.
Not for our disease just yet. But who wants to volunteer?
Lyrica - effective for your neuropathy?
Aaron983 months ago
I've tried what seems like countless medications to try to alleviate my neuropathic pain - amitriptyline, duloxetine, gabapentin, carbamazep...
Start a Community