km2149
Member
- Joined
- Mar 6, 2014
- Messages
- 29
- Reason
- PALS
- Diagnosis
- 04/2011
- Country
- US
- State
- ia
- City
- g
I agree 100% agree about right to try deal. everyone should be able to try any drug they want period. sign a waiver or something and that should be good enough. the money was raised for me by friends on the gofundme.com page. it spread like wild fire on social media and so many people donated that don't know me at all. most not all can get money raised for something like this so they can try a treatment. il be updating how my treatment is going on the als news Facebook page and my own page keith miner. im hoping this does exactly what its doing in the drug trial. it's the same cells from 8-12 week old fetus from same company neuralstem. 4 injections over 3 weeks into 4 different areas of my spine. il also being doing lots of physical therapy to get the new cells acclimated to my body. there website is unistemcells.com. u can email dr. Terri liu she is the coordinator and is so awesome at answering questions u may have. tell her you have been talking to me keith miner and u would like more info they have also been extremely honest they arnt lying and saying you will be cured or anything like that. if you condition is pretty bad they won't offer the treatment because it won't help enough to really out weigh the cost. if you are not in too bad of shape then it will probably help you the longer u wait the less it will help. I just wish I knew about this 3 years ago when I got diagnosed. it irritates me so bad that the doctors here don't tell us about treatments over seas. if , I would of got this treatment back then who knows I might not be as bad as I am now and im not as bad as most patients 3 years into the disease. I feel very comfortable with WU medical center and excited to leave tomorrow and get going on this treatment and see what happens. it may help a lot it may help just a little but either way it's gonna help. they have been doing this exact treatment for 15 years and the doctors there just can't believe the U.S. is just now doing drug trials on these particular cells. the doctor was telling me I. shouldn't have to come all the way to him in China for this. he told me that these cells have been known for a long time these are great for treating all kinds of neurological disorders not curing just improving quality of life and prolonging life. he said the U.S. is way ahead of other countries on lots of things but with our fda and governments archaic way of doing drug trials it puts us way behind on a lot of other things. anyway sorry for rambling just trying to give everyone info. Just research.this in your own way, il let you know how or if it helps me but if it does that's just more proof these cells work and patients should seriously consider this treatment especially cause the Emory university trial won't be done for 5-7 more years and most of us can't wait that long. also I founded a charity called Racers Against ALS Iraise mmoney for other families battling ALS to help them financially through there battle. if this works for me im gonna work my butt off raising money so I can help others pay for this treatment. racersagainstals.com