Min-102 (I am not on the trial, but how are you doing if you are?)

[monkeybus]

Folks, I know it is early days, but are any of you on the Min-102 trial showing any progress at all?

Not, of the sort of - "Well, maybe XXX, sometimes, I can walk YYY more metres (before collapsing)", but actual results? Whatever they may be. Plenty going wrong inside our beautiful bodies, would take a praising-Jesus miracle to sort us out. And I wouldn't rule that out, nothing is off the table for me.

I am sure some have reported Min-102 progress in the various threads we have on the go here, but what is going on inside your bodies?

Could you let us all know? Certainly, I am all ears.

And the bad, I have read about water retention/swollen legs, et al. What else?

youtube.com/watch?v=VnAoWJ5...(Not working as expected?)

[SongStream]

The most important benefit I feel I'm receiving is that my neuropathic pain is so much less!

Thanks for including this video! I will send it to my physical therapist to incorporate with my program in addition to proposals from Stanford's AMN physical therapist.

(I'm waiting for the AMN cartoon consisiting of a large number of pratfalls.) <-------I should be censored!

[StevenSims]

Hi Monkey,

I don't think min102 can undo the damage that's already done but hopefully it will stop progression? It's the only drug that has stopped my neuropathic pain though! Can't say I've noticed anything else apart from my appetite and weight gain! Hopefully it will stop my progression and it might be a good treatment for the newly diagnosed in the future?

All the best

Steve

[KennyInPA]

It's definitely not a wonder drug where it reverses any damage like Steven mentioned . I have noticed the neuropathic pain decreased and less of the "fire in the legs" than before. If it is indeed making the long chain fatty acids less toxic like it intends to, it is definitely in a way a wonder drug for AMN patients as we don't have anything else.

I'd love to shed the excess weight, but I gotta stick to my normal diet at least until the trial is over to show a true outcome of the drug. One positive is all of the frequent flier miles I have earned from traveling back and fourth to the site has earned me a first class ticket to Arizona next weekend to soak up some legit vitamin D and hot temperatures! I do dislike the time change though and having to take the drug on the same east coast time, but early bird catches the worm they say!

[SongStream]

Any drug therapy I believe will not reverse the damage already caused by the toxic VLCFA, but it will (may) halt further progression, This is of the essence for those newly diagnosed and before any dreaded symptoms appear.

[monkeybus]

Doing something positive, has to be good news.

Was in one of the trials on rats they reported it reversed locomotor damage. That was what I was hoping for, and you never know.

Early days yet. Then again, you cannot trust trials on rodents. It was on rabbits they reported that high doses of antioxidants had profound effects on AMN.

Animal results don't translate to humans.

Happy Sunday, everyone.

[SongStream]

You know, I can't rule science and research out. I'm thinking of nerve cell regeneration that made those with paralysis walk again.

[mjwellman]

Hi guys, i’m 24 (newly diagnosed last year) so reading through your experiences have given me a lot of hope regarding the future of MIN102. Hope you’re all doing okay.

-matthew

[Aaron98 in reply to mjwellman]

Welcome to the forum, Matthew! I'm glad you found us. If/when you have the time and inclination, please let us know a little about your story with AMN. Where are you from? How are you getting along? I was also diagnosed at a relatively young age (29), and know full well that this disease can be difficult to deal with. Making connections in this group certainly helps, though. Cheers!

[mjwellman in reply to Aaron98]

Hi Aaron and thanks for the warm welcome. I’m glad I found this community too and am thankful for its existence. I’m from the UK, since my diagnosis in June/July I’ve been working through trying to address my symptoms as best I can (I’ve just been hooked up with FES therapy on both legs to help with the dropped foot aspect of the condition) whilst “lurking” on this forum for the past few months for ideas. My symptoms are: difficult walking long distances, especially on uneven/slanting terrain, weird coldness/numbness in my feet, bit of brain fog from time to time (pretty certain its from waking up so many times every night with leg spasms, though)... that kind of thing. It’s scary to be diagnosed with something so early in life, isn’t it?

[StevenSims in reply to mjwellman]

Hi, what part of the uk are you? Have you been in contact with ALDLIFE? They have a weekend get together every other year, I've been attending them since 2011 and I've gained lots of knowledge from top doctors all over the world also made some friends, it's good talking to people in the same position but it's not nice seeing some of the guys and boys with Cerabral ALD though!

All the best

Steve from South Wales

[mjwellman in reply to StevenSims]

Hi Steve, and thanks for reaching out to me! I’m from the South of England so not too far away. Am following the charity on Facebook but haven’t heard of the get-togethers.. when abouts are they usually? I think I’d be up for attending it and meeting others in the same boat as us!

[jordlee21 in reply to mjwellman]

hi mate i was diagnosed with AMN in 2012 aged 22. Nearly seven years on i now need two crutches to walk and wheelchair for longer distances. My symptoms have progressed but thankfully not rapidly over this period. I also have the FES to help my foot drop and i also get the night time leg spasms.incontinence is my worst problem with this condition.i live in sheffield UK. Hope your as well as can be jord.

[StevenSims]

Hi the one last year was the 4th to the 6th of May and it's usually in a nice hotel and food is included just make a donation! Have a look on the Aldlife website lots of info there! Also my story is published on there!

All the best

Steve

[wilburlois15]

Hi Monkey,

I've been on the MIN-102 trial since last June and am about 6 weeks away from my 1 year (48 week) update at NHNN. As stated above, there is definitely no revolutionary impact from the drug. My symptoms seem to go up and down just as they did before the trial and it is very hard to say if it has halted progression because the progression was so slow... 1 year isn't long enough.

What has changed? Well I now weigh 13 stone rather than 11 and a half. The water retention means that not only my ankles have swollen but other parts of my body too, including my face. Dare I say it, I look healthier. The weight gain was relatively rapid but stabilised after 3 months. Clearly, weighing the best part of 10kg more means getting around was somewhat more tiring.

Beyond the obvious, everything else seems somewhat more cryptic. As I just wrote on another thread, I can't remember the last time I had a severe full-bladder problem. I seem to be able to manage the urgency and the sensation better than I have done in a very long time. It's a low base, but I think something has changed.

Walking. I have a very (un)healthy attitude to walking which involves going out a few times a week and tiring myself out. I fall regularly but have become (touch wood) very good at catching myself and carrying on. I still fall and walking is still exhausting. BUT. I now seem to have a mode where I can walk and not fall. It's slow and it is easy to degenerate into my usual gate, but I do seem to have a choice.

Myoclonic jerks. Usually in my thighs in the evening. These have not disappeared but have lessened in severity, such that they bother me a lot less. I am no longer kept awake at night as my muscles writhe around. In fact the only thing that bothers me at night time nowadays is the nocturia from the oedema.

Might these things have happened anyway? Maybe. The bladder improvement is concrete though because I have not changed my fluid intake at all and my attitude towards my bladder is changing because I can get away with more. The new slow walking mode? I don't know... surely I could have done this at another point but I didn't.

Like the progression is very slow and difficult to identify year-by-year, I guess any reversal will be equally difficult to identify. It's no surprise the trial is over 2 years. Hopefully it is the drug which has made these changes, but I am well aware of the strength of the placebo effect...

[SongStream]

"Attitude towards my bladder is changing because I can get away with more." At night, sometimes I'm able to delay it and fall back to sleep. Oh, yes, I have a hateful relationship with walking. What used to be pleasurable is a necessary chore. A power chair provides me pleasure by way of trails, access and less fatigue.