Recent content by jennyinfrance

Forum rules: Engage in quality discussion as though it were face-to-face; avoid profanity, no personal attacks, no harassment, calling-out, avoid being vulgar, offensive, etc. Use extra discretion and etiquette when a topic is sensitive. This post complies with the above rules in every...

Just to let you all know, I have been taking RCH4 For two years and five months. Diagnosed in June 2013. Most of the damage was done by the time I started taking RCH4 in April 2016. I was already on a peg feeding tube, I had lost my speech and I was using NIV about 12 hours a day; but I still...

Drugs are proved in costly clinical trials, not labs. They don`t have the money

Well said!

hi Tim, a similar thing happened to me. I have been on RCH4 for over two years and it has definitely slowed my progression. Being a member on this ALS forum, I wanted to share my good news but a certain moderator was so abusive towards me that I don't participate in this forum any more, only...

He sent the info some time ago before it all got nasty

RCH4 is being reviewed by als untangled. The RC Group have sent Richard Bedlack all the info required

I understand, I really do, your defence of Laurie because I feel the same way about the R C group. Aside from supplying me with this drug, they have provided moral support and kindness. A little known fact is that they can organise home help volunteers from church groups globally. I understand...

GregK I said I wouldn’t come back to this forum but I have to respond to your insults. Where in any of my posts have I made personal abusive attacks? My post re Laurie was a critique, nothing more. In your post to me, you start off by saying good riddance, you went on to call me emotionally...

Thank you for posting your wife’s progress. GregK, a moderator, has just insulted my intelligence. I don’t need this upset. I’m afraid I’m taking myself out of this forum. Good luck against this pack of wolves x

Re: RCH4 revisited again Well here we go again. If you can’t be civil then I’m done with this forum. I’m just telling it as it is. I really don’t know what your problem is. You seem very bitter that I’m doing ok on this drug. I’m a good person and don’t deserve this goodbye

Hello Stuart, it appears your posts to me have been taken off. This forum baffles me.

Yes I can still breathe without the vent. Admittedly, I get out of breath very easily but if I’m sitting, I can spend an hour or so before I feel the need to go back on the vent. I don’t know if they are taking more patients but this is their contact form. (link removed) A while ago, after the...

Yes I did have the trach and vent in November 2016. I asked for it, i didn’t wnt to wait until it was an emergency. I had six months stability about a month in to my treatment. When I started the treatment, I had already lost my voice and had a peg fitted about six months previously. I also had...

Re: RCH4 revisited again I had to complete a form but once I was accepted, I took about a week before I received the drug. I have it injected into my buttocks.