Last week I had my 24-week update for the MIN-102 trial at NHNN in London. It was the usual early start with fasting bloods. Then the tests began with the 6 minute walk followed by the physical and neurological exam, the strength and balance tests. After this, I was booked in for the echocardiogram at the UCL hospital on Euston Road at 3:31pm. Unfortunately for me, the computer which operated the balance machine wasn't working so I had to go back to NHNN afterwards to take the balance test at about 5pm. This delayed me getting home because otherwise I'd have been finished after the echocardiogram.
Aside from the echocardiogram, which apparently we all have to take now to make sure there aren't any adverse effects on the heart from the water retention, everything was as expected. The tests went better this time: I walked further and was stronger, but I have no idea what kind of difference they are expecting, if any. What I do know is that I am still hopeless at balancing with my feet together and eyes closed. The physical and neurological exams were the same and there were the same peripheral neuropathy lifestyle forms to fill-in.
The echocardiogram is on a different site and it took me about 20 minutes or so in a taxi to get there. The clinic is also not close to the entrance of the other hospital. However, once there, they saw me half an hour early and the procedure took about 20 minutes so I left before the appointment time. According to the radiologist, my heart "squeezes fine" so there shouldn't be any follow-up.
After waiting out a fire alarm test back at NHNN, I had the balance test and then went home with 2 boxes (30 bottles) of the medicine to tide me over to the next appointment in May.
The results of the tests seem to confirm my hunch that I am seeing some incremental improvement in my symptoms. It's not huge and is helped by the fact that I certainly saw some deterioration in the early part of this year before the trial began, but I am finding moving about easier, especially when I'm not tired. When I am tired, after walking for a while, I just degenerate back to my usual form.
Hope you're all doing well
Angus
Written by
wilburlois15
To view profiles and participate in discussions please or .
Really good to hear that you've had improvement on your tests? I'm 10 weeks behind you! The cold weather is making me worse so no improvement for me except I'm still not getting any pain! I'm happy about that! 30 bottles seems a lot! I was told I'll have 20 bottles next time, I'm looking forward to airport security with them it will be fun!! So glad I bought a wheeled cabin case! Have you had any more changes to your dose? You seem to take a lot! I'm currently taking 9ml and my weight has stabilised but I still have a bit of swelling and I'm also urinating once a night even though I've had Botox in my bladder! I think the fluid retention is doing this?
My dose was reduced to 12ml in early September. Guessing I won't need all 30 bottles but they provide them in sets of 15 so not much choice. You will definitely need that wheeled case!
I am urinating a lot. It's more obvious now that the weather is cooler (and I don't sweat as much) and also more obvious at night time. I think my ability to hold my bladder has improved so by day I don't have any real problems but if it wakes me up then I have to go, often 3 or so times per night. I'm almost certain that this is an effect of the fluid retention. Apparently they can prescribe a diuretic but it's not obvious that I want to move the problem to day time instead.
The improvement in the tests was consistent but not huge. The most obvious change with the 6 minute walking test was my consistency ... I walked almost exactly the same distance each 2 minute split, whereas at the baseline I started at the same pace but slowed down through the test. Definitely an evolution and not a revolution...
I've just had a email saying no dose adjustment with the PK result from the last visit so I need to stay on 9ml, I'm quite glad about that as my fluid retention is not really that bad?
Do any of you guys suffer with nerve pain? I'm interested to hear if the trial has helped with it as it has for me? I usually take vitamin d3 through the winter but this is the first time for years that I haven't had to take any?
That's awesome! I usually take D3 weekly, but have forgotten and yes I have felt fine without it.
I'm hoping my weigh gain is soon stabilized, I feel rather fat..haha The water has gotten so bad my home nurse couldn't find my veins as the water hid them.
I'm 3KG (or 7lbs) heavier than when I started with very little or no swelling. My walking isn't any better, worse I would say so I'm interested to see how I do on my walk test in London in 2 weeks time. I'm still on 11ml as they never got in touch with me after my November appointment.
Awesome to hear! I’m up around 7kg and stabilized at 10mg. They upped the dose as so. No big changes here other than urination has been smooth with little struggles as previous. So far I’m happy I’m getting to try it!
I'm at day 49 in the trial conducted at Stanford. Have had no weight gain nor edema swelling which made me think I'm taking a placebo. However, I was told that only 22% of participants have this adverse effect so not all will have swelling. I'm so grateful to be able to be in this study and the comprehensive neurological exam, MRI, balance exam, 6 minute walk, and other tests have been so helpful to me.
A few days ago I was asked to lower my dosage from 10 ml to 8 ml which I felt was unusual. Just curious, is there anyone else that had their dose lowered from the starting dosage?
Hi, I had my dose lowered to 9ml after the 4 weeks appointment and after the 12 weeks I was told to stay on 9ml from the PK blood results! I'm glad because I was gaining weight very fast! It's stabilised a bit now but still about 8kg up! I have my V3 in 3 weeks!
Not from the starting dosage, but mine was increased to 17ml after 4 weeks and then reduced to 12ml after the 12 week appointment. My weight peaked a week or two after the reduction to 12ml at +10kg. I am now about +7kg.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
MIN-102 trial: 24-weeks
MIN-102 clinical trial, is it worth?
