View Full Version : First time posting
sigma35
05-10-2009, 09:08 PM
I was diagnosed about a month ago. I was searching the internet about ALS when I discovered this forum. This is great, I'm getting more info here than I thought possible. I have a couple of questions. How fast does this disease progress? When I saw another doctor ( my second opinion on my diagnosis ), he told me it was starting to affect my arms, not just my legs, as I originaly told him. Two days later, I started to actually feel fluctuations in my arms, I never noticed them before. Is this all in my head, now that I am more aware of the symtoms, or can ALS really progress that fast.
joelc
05-10-2009, 09:36 PM
Welcome to the forum - I am sorry you have a reason to be here! The first thing I would like you to be aware of is the fact that there is no way to predict progression rate. Doctors like to quote all kinds of time lines, but the truth is that they can't and everyone is different. A positive attitude and not worrying about what you can't control is the first step to surviving a long time with ALS.
BethU
05-10-2009, 10:14 PM
Sigma, I'm so sorry for your dx, but glad you found us.
As Joel says, everyone is different, and you really can't predict. But from my own experience, I became much more aware of "symptoms" after my dx. I think that's natural for many of us. So that could be a perfectly logical explanation.
sigma35
05-11-2009, 08:07 PM
Joel and Beth,
Thanks so much for the concern and response. I will keep reading the forums, the positive attitude I am getting I know will help me deal with this. So far, my attitude has been pretty good, I still make jokes at work about this as well as anything else, it's just the way I am. My Boss told me he would curl up into a little ball if he had this diagnosis, he can't believe how I am dealing with this. Again, thank you so much for the information.
Kevinski
05-12-2009, 01:36 AM
I have bulbar onset cannot talk and my arms and hands are starting to weaken.There are no hard and fast rules ,some progress quickly and some slowly .All I know that I am a true believer in trying to have a positive out look on the whole thing,no easy task at times but for your own sanity and your families ,you have to try your best to keep fighting and being positive..kevin fro Calgary
Marjorie R. Wilcox
05-12-2009, 05:25 AM
Welcome Sigma35 and sorry you have to be here. I think Beth said, "Hope for the best but prepare for the worst." That's how it goes to put it in a nutshell. The Bulbar kind seems to be the worst, but eventually ALS strikes the Bulbar region anyway, I am told. In any case each person is an individual case. You can find someone or many that are in the same boat with pretty nearly the same progression, and then there are many who aren't in the loop. You just have to keep going, doing all you still can along the way, shining brightly instead of making a stink.
obamaviva
05-27-2009, 04:01 AM
I never noticed them before.
redneck charger
05-27-2009, 05:15 AM
Sorry for your dx sigma.. but you have truly found a wonderful place.. this place and members like you are the most supportive and caring individuals..Sorry why you are here.. But happy that you are..
brendapals
05-27-2009, 08:59 AM
sigma-
Welcome to the family-we're sorry you had to find us, but, and that's a big BUT,
you have found the greatest bunch to share your questions, fears, ups, downs, pretty much anything you ask-you will find support.
I was dx wirh bulbar onset 1 yr ago-I still work in the yard, around the house, follow our 3 boys crazy sports schedules, I don't talk very clearly now, but we try to focus on what I CAN still do. Attitude is 3/4ths the battle!
prayers are with you,
take good care,
brenda
