greg45

BigBang you can ask all the questions you want.
My fasciculations did/do not stop when I use those muscles or flex them. I can still see my fascics when I flex them
Hope this helps

Hi Greg.

It's hard for me to even ask you a question since I can only imagine what you are going through.

Still, can you tell me were your first fasciculations (biceps and thighs) constant, visible, did they stopped when u used or flex that muscle or not?

Thank you very much

Hi Greg,
please e-mail me your e-mail address.
I am [email protected]
thank you,
Ed
http://treatalsnow.org/

Hi Greg, My wife is 38 and was diagnosed about 1 1/2 years ago. we are from NW Iowa, and also go to Mayo in Rochester. our next clinic is in Feb. Patty, is taking Rilutek, and has been part of the Dex trial for about 18-20 months or so. We have 2 kids 8 and 2, and luckily my parents live pretty close and are able to help out a lot. Just wanted to say hi, as I see you're also at Mayo. Hope things are going as well for you as they can.
Gary

I sympathize, understand and hear ya loud & clear. I'm a former marathon runner- I get the frustration- fight with my own underwear everyday and frankly the underwear is winning these days. I'm trying hard (not always successfully mind you) to focus on what I can do. I try to make more thoughtful decisions; spending time with people I love, even though I'd prefer to hide out under my duvet. It is crazy and it is crappy-I'm not a religious zealot, but I will tell you that praying helps me. Not sure if it's the meditative aspect, and frankly I don't care why it works, I'm just happy to find peace of mind & soul. Take care Greg! Be gentle with yourself.

Hi Greg,
Very sorry you find youself here.
I know exactly what you and your family is thinking. It's overwhelming.
I was diagnosed 09/2011, I had just turned 40, married with 2 kids.
I started rilutek in May, and my personal opinion is, it helps. I find my breathing better, swallowing better. But just my opinion.
I believe a few important things have kept me in the game:
1) Surround yourself with only positive people (including yourself)
2) Take the recommended vitamins (last thing you want is a cold or flu on top of this - I can give you a list of what I take if you want)
3) Never give up hope, there is a ton of very promising research being done.
I'm not really on the forms much anymore, as there are some Facebook ALS groups that I find to be a bit easier to navigate through.
Find me if you like on FB. Casey Garrah.
Hang in there.
Cheers,
Casey

Hi Greg

Hi Greg- Just wanted to tell you that I was diagnosed in April. Saw the neuro again in August and went to ALS clinic in September. It's not unusual here in Canada to have a 4 month gap. Maybe the thought is that the patient needs time to soak it in. I'm sure, like me, you have a million things going through your mind- I needed Ativan to make my brain slow down and get a decent night's sleep. Never thought I'd ever need a tranquilizer- but then never thought I'd ever get ALS either. We're here for you!