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  • Hi Big Mike,
    I saw your Bi-pap question about it leaking while you're on your back. I've never used a Bi-pap, so am not replying in the thread, in hope that someone with experience will answer your question.
    Ann
    Hi Big Mike, I'm relatively new to the forum, but have read several of your postings. I'm still trying to figure out how to get around on this forum, but wanted to ask you a question or two. I read one of your emails pertaining to what you take for supplements plus you take Rilutek. Have you ever had any side affects from Rilutek, my mom was just dx in December of 2009, she started with Rilutek and the very day she started she started getting what she described as electrical pulses running up and down her body, and in her head, enough that she couldn't sleep. She stayed on it for 4 days, then called her Dr. and let him know, he told her to stop it, because he hadn't heard of this side affect before, so I'm trying to get a posting out to see if anyone else has had this? Thanks for your help. trtt
    thank for responding. i have looked into the walk aide . i think im being too premature . i will reserve that for some one with major long term drop,i refuse to believe i will need that. alotho it would be nice to walk normal and move my toes again. not sure if it will be long term for me, i hope not but the drop came from bleed in the brain. they removed it in june the drop got worse, so im not sure yet how much damage they did to the surounding area. but thank you for advice.i wish you wellness :)
    Big Mike,
    How are you? I am seriously considering starting my husband on the IVP Glutathione. Have you tried this? I actually lived in Montana for 2 years in the 1970's-owned land on the Swan Lake/Swan River. LOVED IT!
    Thanks for the response, sukilou. Things are slowly deteriorating. My left foot drop has gotten pretty bad, and I wear an AFO brace when out and about. There's atrophy in that left foot and ankle but minimal elsewhere. The main problem is with the umn damage. I have a lot of clonus and spasticity in my legs and arms now, which I guess is to be expected from UMN dominant als. I'm not sold on Rilutek as it does not appear to help me and my liver enzymes are going up. I do take quite a few supplements as well.

    You mentioned before that you go to the ALS clinic out in Portland. How do you like the clinic and Dr. Goslin, if you don't mind me asking? I think I will be moving out there with my mom since my sister lives out there and there is a dearth of any clinics here in Montana.

    Sorry, I didn't receive your other message. Hope all is well with you.

    Mike
    Hi Mike, I sent you a PM, but I don't know if I did it right. If you don't get it, let me know and I'll try it again. Hope you are doing okay!
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