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I know Tillie.

Thanks GregK, Lets hope hoards of people come out of that closet. It must be pretty full by now. Steve

Hi GregK, I am also taking RCH4 with great results. I know of about another 18 patients that are taking it. Look on Patients Like Me web site to see more patients. In addition, I know of a few more than are featured on that web site. I also wanted to point out that the RCH4 web site is not...

Hi Nick, I just replied to your post about RCH4. Would it be possible to connect via email [email protected] I live in London UK. Thanks, Steve

Hi Nick, That's great news. I have been on it for 6 months too, and my ALSFR-S stayed pretty stable too. But has recently dropped by a couple of points. Not bad though considering most people who suffer from ALS drop about a point every month. Steve Williams

Hi all, Just wanted to add that I take RCH4. It has no side effects, its free and my progression has slowed by 63% since starting. If anyone was presented with this option, I think it would be difficult to turn it down. Worth a try I'd say, but I'm on it so I would say that. Steve Williams

Thanks all, Some more brilliant suggestions. I would try Modafinil, as it could help both fatigue and cramps, but I read on another forum that it affects bulbar issues. I think the bulbar problems recede once you stop taking the drug,, so I might give it a go. Mexiltine looks like it might...

Thank you everyone, Some great suggestions. It seems there's no easy solution, i.e a drug that can help. I have trouble with my nasal passages, and I suddenly wake up with severe cramp in one of my legs, so sleep isn't as restful as it could be. I am taking magnesium for my leg cramps, but...

Hi all, I have bulbar onset lower motor neurone ALS, and am getting very tired a lot of the time. I know fatigue is aa big issue for ALS patients. Does anyone have any hints or suggestions/meds etc? I have been chelating for a couple of months, which could add to the problem. Thanks Steve

Yes, google it AKNate. I was surprised. It took a bit of research, and courses are not obviously for non-medical professionals, but I found one or two close to me. I also found a company that would come to my house and give me a day's course privately. Affected - I put the cannula in myself...