MIN-102 clinical trial, is it worth?: Hi , Any... - AMN EASIER

AMN EASIER

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MIN-102 clinical trial, is it worth?

justcarryondude profile image

Hi ,

Any updates on MIN-102? I am really excited about this molecule because the 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?

Do you feel better?

28 Replies

Hey dude!

I definitely wouldn't say it's a hoax, as there are aspects where I do feel things have improved. (Less leg cramps, urine flow, among a few things.). It isn't meant to fix any damage that has been done, but to hopefully lessen the toxicity of the LCFA to hopefully prevent continued damage. On the good side of the trial there hasn't been any bad side effects, only than some weight gain from the drug. I will let any of the other guys chime in and see how they feel about it.

Ken

Hi,

I agree with Kenny! The damage can't be fixed but hopefully it will stop or slow progression? The best effect I have is Pain relief and less muscle spasms! My bladder hasn't improved, I've had Botox and I'm waking about once a night to go but it's probably due to the eodema/ water retention but it's not too bad!

Hopefully we are educating doctors for the future?

All the best

Like Steve, I, too, have much less neuropathic pain and have cut down on Gabapentin. There are occasional night time flare ups but it has improved immensely. I have a MRI scheduled next month prior to my first annual assessment. I question if they are looking for changes from the first MRI. My walking varies and I have slowed down on the treadmill. I'd be interested on how I will fare on the 6 minute walking. However, I did improve the last time and that was after just recouping from a fall. As this is a 2 year study, perhaps they are looking for a halt in progression like what was considered with Lorenzo's Oil. But what we need along with others with spinal injuries, is axon regrowth and elongation since we suffer from the symptoms related to its degeneration. For those with scientific inquiring minds, here's a look at the process: sciencedirect.com/science/a...

Thanks a lot guys for your input. This does sound exciting that something is working. But, the bigger lingering question that I have in my mind is that whats the outcome on 6-minute walking test. If that is not improving then, do other improvement that you guys are indicating with respect to neuropathic pain is it enough? One can always take gabapentin.

I do understand that the slow-moving nature of the disease makes it difficult to understand the progression and impact of medicine on the disease, but still, isn't it that we are looking at increasing mobility and strength after all.

Also, it will be nice if you can throw some light on since how long have you guys been on the trial? and When was the last time you undertook 6-min walking test?

Sorry to bother you all with these basic questions, but coming from India, no one has any clue about the disease or its possible treatment.

If I'm not on the placebo and my neuropathic pain was diminished, I'd be satisfied. Gabapentin didn't help even at the maximum dosage. I have had it really bad where it kept me up at night in dire pain and combined with spasms, it led to insomnia. I posted about this hellacious experience. My annual follow-up will be in October.

Hi I just had my 12 month check and I think there’s a small improvement, I’m sleeping better urine control better . happy with the 6 minute walk it’s the only medicine I’m on you have to keep positive ,I’ll never run a marathon but keep active my trial is in Paris at least I’m getting to see the city I live in Ireland 👍

I go first week of October for the 12 month check, MRI, walking & balance testing..

It's definitely an adventure you just go with the flow!

Good luck !! Lets hope we see an improvement. . :)

I have my 12 month check up in October but my 6 minute walk test did improve from my first to my 6 month test. I have not noticed any other changes in neuropathy pain, muscle spasms or any other changes others have noticed but I would take “no further progression” any day and that is the hopes of this medication. Will update after my appointment in October.

How are people doing on the balance board? The last time was worse than the 1st, however they had me walking all over Boston last time and my legs were jello. Hoping I can suck it up and stay on the board this time!

At the gym, I practice the Romberg stance (eyes closed) and stand next to a railing in case I need it. The trick I've learned is to concentrate on your breath and slowly breathe in and exhale while tuning out everything. Some times I've gone past 30 seconds without support. Note: You can do this at home by practicing in a corner with a chair in front of you. Also, I practice walking backwards, again next to a railing. This is another trick I've added to my bag while working with my neurological physical therapist. And remember, look for a neurological physical therapist. Something else I'd learned when a regular physical therapist wasn't able to fully accommodate my needs.

It all sounds like there is some clinical efficay with MIN-102, althoug it manifest itself differently in different patients. However, with a regular rehabilitation and may be if this drug is doing what it is suppose to do, I beleive we are looking at some robust disease management paradigm. Would that be right to say?

I just hope that no further detoriation is good enough!

Sounds about right. Like the others, I am walking further in the 6 minute test. I also think the balance test is easier. However, day to day I am not seeing a great deal of change. I think my bladder has improved but this is offset to a degree by the effect of the water retention. Maybe unchanged is good enough. I don't think the testers know what result they are looking for...

All of you on the test, what are the side effects, boys?

Can we post them all up? I have the right to know.

Side effects for me are slightly swollen ankles. My walking is worse than it was a year ago. I get no pain so no improvement at all for me.

walking is worse? Are you on the drug arm? Most people are saying they see some improvement if not then at least not further degradation.

Slight fluid retention, increased appetite and weight gain

Hi guys, Hope you are are doing good. and the trial is helping all? Do we have aby better news on this? Is there something more to look forward? :)

18 month update for me in a couple of weeks. Will tell you how it goes.

I have been experimenting with Min-102 for a year and my situation is quite stable, but I have had blood disorders (red blood cells, hemoglobin) and an increase in cholesterol and triglycerides. In addition, dryness of the skin and watery eyes are increased.

In the 6 minute test I walk 280mt

Now, given the problems, they reduced the drug from 17ml to 12ml. Let's see if the values return to normal

blood-related issue ?? Do you think its the function of the MIN or you have a history of similar kind of disease?

Ciao, io prima ero ok, quindi di la colpa al Min 102

damn that sucks!

Speriamo che almeno serva a qualcosa per la AMN

I had my 1 year follow up recently. As far as I can tell, the balance tests and neurological exam remained the same. You can’t be sure of anything from the balance test because it’s just a bunch of squiggly lines but I did not lose my balance. On the exam, I was watching my doctor record the results and it seemed pretty consistent with last time. The hardest part for me is to tell the difference between hot and cold water below my knees and I cant feel the vibration of the tuning fork on my toes/feet. My 6 minute walk test improved from my initial and 6 month test. 378m, 401m, 417m respectively. Just received the results from my MRI and all is normal. Still can’t be sure if I’m on the drug or placebo but I’m happy with no decline and slight improvement in walk test. Anyone else have news from 12 month visit?

Just completed my 12 month visit last week:

6MWT, 6 minutes

Baseline 11/21/19: 405 meters

V4 10/21/19: 429 meters

Dynamometry, left leg:

Baseline: 15.2 kg average

10/21/19: 14.8 kg average

Dynamometry, right leg:

Baseline: 15.3 kg average

10/21/19: 13.8 kg average

I actually improved on the 6MWT which was a feat considering that I had just moved and it had taken a great toll on me physically (I packed up in 2 weeks). I could hardly walk and spasticity was a killer. Once moved in, I only had 4 days to rest/recover/stretch/stretch/stretch, practice the 6 minute walk (6 minutes seemed like an eternity and I was so weary), and get some resemblance of my former self. Sort of like re-stuffing the scarecrow in the Wizard of Oz.

I was validated when I realized that my strength had diminished on the dynamometry. I had felt much weaker and no doubt this was the result of the move and missing the gym.

I was going to start a new post, Min-102: The Sensory Experience, because I cannot tell when the tuning fork vibration begins and/or ends. It's a guessing game with me. It's like when you take an eye exam and can't see the letters as you proceed further. You're resorted to a guess. Same thing with hot/cold, although, I was able to call out quite a few but there was a question lilt.

I practiced the Romberg stance in prepping for my visit and it wasn't bad at all! I could actually close my eyes with feet together longer that 30 seconds!! This, with me stumbling and hobbling indoors holding onto walls and corners. I had been using my chair more often and I am so grateful that it has saved me immense energy!

Merry Christmas and a very happy and hopeful new year to all of you. How are you guys holding up? Any improvement ?

How are you guys keeping up? Any good news?

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