Update from PALs taking RCH4

[mndmarlon]

Hi,

I know that RCH4 threads have caused controversy in the past but my wife is still doing so well with next to no progression after 4.5 years of taking RCH4 and I really think that feeding back this info into the ALS community is very important.

For those who don't know my wifes history, she is one of 3 identical triplets. She has lost her 2 sisters and her mother to ALS since 2015. They all passed away within 18 months of first symtoms. My wife Vanessa started RCH4 at the start of 2016 and since them her ALSFR-S scores have frozen and actually gone up by one. My wife has been diagnosed by a leading Neuro in Brisbane and also has been gene tested and confirmed to having the same gene as her family who has passed away.

Hereford Times 2.jpg

Her ALSFR-S chart is here

Ness062020.jpg

Hoping moderators are Ok with me starting another RCH4 thread. Happy to answer questions on RCH4. Want to keep the thread friendly and full of info on RCH4 and hopefully I can get some other PALs on RCH4 to post their experiences as well.

We are hoping that RCH4 will be making it to FDA trials in the future which will be great as it will guarantee my wife's supply and also will help many others if it works as well as it has for my wife.

Thanks

[Admin_MND]

We provide the forum to encourage supportive, informative and useful conversations for people living with and affected by MND.

Occasionally subjects will come up that cause distress and anxiety for members. With this in mind and as we have previously closed other threads on this topic, we will be closing this one to any further comments.

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