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New member
Jan 31, 2006
Loved one DX
Hello new friends!
Im curious to know if anyone has been through a stem cell trial and if anyone knows the risks, the benefits, etc. ? I haven't yet researched it but been told by a friend that a few countries are starting stem cell on ALS patients, Scotland, Germany and the U.S. Does this sound like a possible pot of gold at the end of a rainbow?
Hi Lilbro,

The issue of stem cell treatment has been discussed on this web site before.

I know there are a lot of studies underway regarding stem cell research. There are also some clinics currently providing stem cell treatments in China. I don't have any specific references at hand, but I am not aware of any case where stem cell treatments from these clinics hav been successful in treating ALS over the long term. From most of the cases I have heard about, the recipient typically experiences some improvement over the first couple of months, but then the new nerves attributable to the treatment begin to degenerate as well.

Most of the clinics offering these treatments cannot or refuse to provide evidence of the long term benefits of the treatments.

I think stem cell treatments will be part of a treatment for ALS - but first I think we need to figure out how to arrest the progression.

Hi guys,
I was involved is a stem cell trial three years ago in Vancouver. It wasn't embyotic stem cells, but my own stem cells filtered from my blood into a concentrated unit and then put back in. The purpose was to see if there was any side effects from this procedure. There was none. The next trial they want to do is mark the stem cells so they can trace them and see where they go in the body, once they're put back in. Its really hard to know if it did me any good. My progression is slow, hopefully it slowed it even more.
I thought the ER episode was good, it showed how important maintaining lung function is to fighting this disease. And the choices we must make. For me, when it comes time for a trech, I won't hesitate. It also showed the importance of being able to communicate. The tools are there, we must use them.
Stem Cells

Thank you Richard and Les. I just told Darren (my brother) all the info you just gave me. It seems that as each day goes by he tells me he is in
more pain throughout his body from his neck to his legs especially. He didnt have any pain until the day he had his spinal tap tests done and thats been almost 3 weeks ago! I thought with ALS you dont experience so much pain? Could he be misdiagnosed? Or maybe the spt test was done incorrectly?
thanks again guys.

Raschelle, Darrens Big Sis.
Re: Stem Cells

Hi all,
I wanted to bring up the issue of pain after reading the last comment. I too have magor pain in my legs and some in my hands, but the ALS clinic keeps telling me that ALS doesn't cause physical pain. I have 1 sympothetic doctor that gives me codiene but the others do not believe me. Is it psyco-somatic, am I crazy or what? Does anyone have a comment about this?
Thanks and well wishes to all.
Hi guys,
As far as pain goes, The only time i feel any pain is when i flex or use a muscle too fast and it cramps or locks. For me the issue is more a matter of getting comfortable. I have lost a lot of muscle in my neck, and have to choose the right chair. When we go out it gets to be a problem. Right chair or problem....wrong one and its a nightmare. I have neck braces but they're not terrific. Crazy thing is, since my diagnosed 5 years ago, I haven't had so much as a cold. I always tell people that, except for the ALS, I've never been healthier. Strange disease
Hi Les,
What is the right kind of chair? Up until now, I have just had speech and swallowing problems, but in the last little while, I have felt some weakening in my neck. If I turn my head around it hurts in the "cords" of my neck. I also have difficulty lifting my head up if I am laying flat on my back. Any suggestions about the braces, what kind is best, etc.
I am like you in that all the little things I had wrong with me left when I got ALS and I never get a cold or the flu like everyone around me!
Hi Guys:
A spinal tap can result in leakege of spinal fluid and result in major headaches... that subside when you lie down. If it persisits (the leakage) so will the pain. The fix is pretty simple I think and may just require a blood patch. If you've had a spinal tap and end up with persistent pain check with your doctor to see if there is some leakage.
Good luck.


True about the spinal tap lumbar puncture thing. I went for one in Nov. The guy tried 4 times to get fluid and I finally said enough of this. Unknown to the doctor and myself he had nicked the spinal cord so I had a leak. After getting home and pushing a bit of snow around the headache started. This was Monday. On Friday I called the neurologists office complaining of the excruchiating pain (similar to a migraine) I am told and they said if it becomes unbearable go to Emerg. I toughed it out until Sunday and the pain went away.
In Dec. I went for another try but this time under an x-ray machine. The guy was in and out in 10 minutes and I laid still for almost 2 hours went home laid down all evening and no pain at all. I think they might have poked you somewhere where they weren't supposed to. As they say sh_t happens. Just unfortunate that it happens to someone already having a shit_y time.
Pain and ALS

Hello everyone:
My sister has a lot of pain in her legs, hips, and neck.

We found that ROM exercises, massage and codiene help the hip and legs a great deal, but neck pain continues to be a big problem.

She is bedridden and has lost all muscle in her neck making it necessary to be very careful in repositioning.

She does get some relief using a small "magic bag" on her neck for a while.

She too had pain after spinal tap, but it did go away !

Hope this helps. Take care all

Hi Leah,
The right chair is one that reclines or tilts back. I can't sit without leaning back. I mainly use an office chair. As for neck braces, thats been tough to find the right one. Most neck braces are designed to keep your neck immobile. The problem I have is that I need to be able to tilt my head forward to swallow. So I need a brace that will hold my head up, yet soft enough so I can tilt forward to swallow. We purchased a manerva brace. Which has a front and back, like a vest, made out of plastic, with an adjustable chin rest that screws to the front of the "vest" and also a head rest thet attatches to the back (which I don't use). Once I sinch it up with the velcro straps, it works great. It not only supports my chin, but also helps to keep my back straight. Without it its hard to walk because I tend to lean forward due to the weakening muscles in my back. However.....the chin support is only adjustable with a screwdriver. When I stand, its great, but when I sit, the chin support sits level with my eyes. My hands can't work a screw driver all that well, and i'm up and down constantly. So basically i only use this brace when i'm going to be walking or standing for a stretch. Around the house I use a foam wip lash collar. It doesn't give great support, but its better than nothing and i'm able tilt my head forward to swallow and its comfortable. By the way, that manerva brace is $900.00. Absolute medical gouging! There is less material with this thing than hockey shoulder pads. My medical insurance covered it for me. And they wonder why our health care is in such bad shape. Hope this helps a bit Leah. I'll keep trying untill i find something that works perfect.
Hi Les,
Thanks for your help. It is good information and gives me a place to start. My muscles are not that weak yet, but it is better to start early. So much of this is just trial and error, isn't it.
Thanks again, and let us know if you find that perfect one!
Hi Guys,

After doing much research on neck braces, and talking to all the ot's and physios and healthcare aides, we settled on the Aspen Neckbrace. It worked great for Henry when we had to transport him via house to van or doc visits. Affordable, (100.00) comforable, flexible, and Henry could move quite easily in it. When we were around the house, he used a soft cervical neck brace, and this was sufficient for in house because we were not jarring him around too much.

If anyone would like to have this Aspen brace, you are welcome to it. It was hardly used and has new pads as well. Let me know, I would love to see someone get the use of it.

Carol Stay Strong
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