Big Mike are you still out there?

[trtt]

Hi Big Mike, trying to get in touch with you. I read a post that you had replied to my posting from a month ago. Are you still taking all your supplements, are they helping?
How has your progression been? My mom is the one that I wrote to you about, that is on several supplements and she has tried Rilutek, but had some strange side effects.

Could you write back and tell us your thoughts? My Mom has had symptoms for about 10 months now. She is loosing her left arm and hand is almost un usable.

thanks
trtt

 

[Al]

He was on here yesterday. He'll probably see this in a day or two.

AL.

 

[Big Mike]

Hi trtt,

I am still here and doing pretty well. I took a nasty tumble last week and suffered some lacerations to the face, but I am doing better now.

I left a message with you on your member page. Yes, I continue to do my supplements and am now using medical marijuana (legal in Montana and Oregon), as well as ursodiol. The marijuana definitely helps with my spasticity and clonus. I think ursodiol also has good potential. It is still too early to know for sure how it is working for me, but I will know over the course of the next couple of months. Your mom's doctor could prescribe ursodiol as an off-label treatment for als. Here is a link to the researcher at the University of Minnesota who is doing pre-clinical work with the bile acid found in ursodiol (ursodeoxycholic acid). He is a very nice man, and I encourage your mom and all pALS to contact him and consider using ursodiol in the hope it can slow down the progression of the disease:

http://www.med.umn.edu/gi/faculty/steer/home.html

Best Regards,
Mike

 

[Al]

Try it again Mike. Link won't work.

AL.

 

[joelc]

I fixed the link. I have been running into that problem alot lately, there is a glitch in our site.