Recent content by Steven A Williams

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...

I agree with AKnate, That's what I did. I would also look into courses on phlebotomy, that focus on putting a cannula in. There are courses for non medical professionals, and most are a day or two long. That is if you don't mind doing it yourself. Good luck, Steve

Have any other patients experience with stem cell treatment for ALS at Dr Steenblock's clinic or Dr Bryn Henderson's clinic both in LA in the USA? Thanks Steve

Hi all, Since the FDA in the USA have approved edaravone for use in their country last week, the UK should try its damnest to do the same, asap so as to extend as many lives as possible. I have written to my MP in the UK, below, and have so far had no response. Can all UK forum members to...

Thanks everyone, From all of your answers, it looks like it simply doesn't work. I was under the impression that it worked for a while, then symptoms returned. I suppose that could be extending your life. I had planned to have a couple of stem cell treatments a year, in the hope that it...

Hello, I have looked at many stem cell clinics, methods and stem cell types in the past two months for my ALS, and have narrowed it down to two candidates: Dr Steenblock or Dr Henderson at stemcell.life At the moment, Dr Steenblock seems to be the most appealing. Have any PALS got experience...