Lighthouse II Trial

[Vivienne47]

Hi everyone. I'm on the Lighthouse II trial in the UK and about 10 weeks in. A few side effects, but some small wiggles now possible in 3 toes that were previously paralysed. Of course it could be a combination of positive thinking and placebo effect, but side effects are probably not easily imagined. Other leg muscles are still getting a bit weaker, so it's a bit of two steps back and a small wiggle forward. Hoping the forward momentum wins in the longer term. Mode of action looks compelling. Look up HERV-K and ALS in the scientific literature if you need convincing to go on it if you are offered.
Vivienne

 

[Clearwater AL]

Vivienne, just to be clear... are you saying you have regained movement in three toes
the were previously paralyzed.? I hope the the Lighthouse II Trial brings a break
through.

 

[Vivienne47]

I started with foot drop and mt foot has been very limp and the toes could curl slightly under, but no more. My second toe kept curling under when I put shoes on. I have been doing a lot of physio to try and keep everything alive as best I can. After about 8 weeks the second toe gave an upward kick. I can now do this on command. Sometimes the big toe comes with it, and sometimes the third toe does too. VERY excited by this.
The toes have not curled under in my shoes since they started moving upwards a bit.

 

[Buglaw]

Fingers crossed. Keep us updated!

 

[Vivienne47]

The other positive thing I have noticed is less fatigue. My husband says I have more energy than he has now! Before the trial I was taking a long nap in the afternoon most days and going to bed by 9.30, and sitting down to prepare meals whenever possible. Now I don't need the nap, stand to prepare food or at social events. I am getting a bit weaker in my big muscles, but believe this weakness was set in train many months ago. I think it will take a long time for any drug effects to fix big muscles so I have to be patient.

My neurologist's research group believe that sporadic ALS is a multi-step process so I have been thinking hard about what my six 'triggers' might have been. I'll post separately on this as I'd appreciate others' input.