MIN-102 trial: 24-weeks

[nikolahn]

6 minutes walking check - have passed 20 meter more than the previous check in October. The overal subjective health state same as at the begining of the trial. The next check on 1.July.2019.

[StevenSims]

Hi,

It's great you've walked further! Hopefully the next 24week appt will improve again? How's your fluid retention and weight gain? I'm back for my 24weeks appointment in 3 weeks!

All the best

Steve

[nikolahn in reply to StevenSims]

I have swollen ankles, almost every day. I have added 2.5kg more than before the trial.

[StevenSims in reply to nikolahn]

My ankles are ok I think my socks keep it in my calves? I've gained 8kg though!

[wilburlois15]

Nice one! I was about 20 or so metres better too (maybe 25). It was quite a surprise because I didn't feel good at all when I was doing it. Hope all else is well with the drug.

[nikolahn in reply to wilburlois15]

I never feel good. Tired all the time. Destiny.

[wilburlois15 in reply to nikolahn]

I am feeling increasingly old. Everything aches. I presume this is an effect of my nerves working better...

[StevenSims]

Hi, Does anyone on the trial feel cold? I'm feeling cold a lot and I'm wondering if it's a side effect?

Thanks

Steve

[nikolahn in reply to StevenSims]

I do not feel cold. I was feeling cold few years ago. To me, feeling cold is not a MIN102 side efect.

[SongStream in reply to StevenSims]

Not cold here as a result of the trial. However, I've always been cold during the winter months indoors and have even worn gloves to keep my hands from freezing. That and the feeling like my feet are in an icebox.

[StevenSims]

Thanks for the reply, I checked my temperature yesterday and I was 35.7* strange? I've noticed for a few weeks and I've been sat in front of the fire and everyone else is hot? I'll have to wear jumpers I think?

All the best

[wilburlois15 in reply to StevenSims]

Interesting you say this. I have just moved house and I can't shake the feeling of cold. It might be the house, it might be me. My wife normally feels the cold much worse than me but not this time.

[StevenSims in reply to wilburlois15]

My wife normally turns the heating up and I usually turn it down! Now I'm turning it up! I think I'll message the nurse to see if anyone else is the same?

Thanks

Steve

[StevenSims in reply to wilburlois15]

I spoke to the nurse and she said no other patients have reported it? She's going to speak to the doc? They've been doing it for over a year there too!

[wilburlois15 in reply to StevenSims]

I haven't said anything because I've only noticed recently. Might just be me in a new house in winter...

[vdillon in reply to wilburlois15]

From a lad who generally wears shorts even during the winter! I’m coming up to 6 months on the trial and am going around with thermals and extra layers of clothes every day, wife thinks I’ve lost it altogether! So thanks for sharing the info, can feel human again

[StevenSims in reply to vdillon]

Hi, how long have you been on the trial? Where are you located?

Thanks

[vdillon in reply to StevenSims]

Ireland and travel to Paris for the trial, 6 month visit in March

[SongStream]

What is interesting about the walking test is that for me, my gait sometimes would vary. I asked how far I walked in 6 minutes for my baseline and was told 405 meters. I felt really good that day and stretched prior. However, if I had to do it today, I would not be able to. So, I don't know how my results would be interpreted.

[KennyInPA]

Question for you guys. Does anyone feel as if the "fire in the legs? has been lessened by the MIN-102? Lately I've been thinking about it and while it could all be in my head, I feel as if my legs are a bit calmer. I haven't had any falls lately, but I can credit that to my leg braces I now have.

[StevenSims in reply to KennyInPA]

Hi Kenny,

Before the Min102 I suffered really bad especially at night when relaxed! Since I've been on the trial I've got nothing! I get aches some nights but nothing like the neuropathic pain I used to get! It's not in your head!

All the best

Steve

[KennyInPA in reply to StevenSims]

That's good to hear, I kind wanted another opinion to see if what I'm feeling is indeed real! I was starting to get more night pains right when I started it and those have been less recently as well. Carry on!

[Aaron98 in reply to KennyInPA]

This is very encouraging to read. As some of you probably know, I decided not to participate in the MIN102 trial at this time, as my wife and I are not done having children yet. I sincerely hope that this reduction in spasms/pain really is an effect of the drug. My neuropathic pain has never been resolved, and I just live with it on a daily basis now. This gives me a little hope that down the road this medication may be able to help us out long term!

[justcarryondude]

Hi ,

Any updates on MIN-102? I am really excited about this molecule because first time there is a possibility of a drug that can help to overcome AMN.

However, I myself is not on the trial, I wanted to understand if the drug has been of use to people who are taking it? (i.e. are on a clinical trial).

Is it really helping? Or all of this is a hoax?

[nikolahn in reply to justcarryondude]

no improvements from my side. Exhaustion and small daily movement circle are my main problems. No sleeping issues.