Curious about progression

[androgel1970]

Hello Brian
Yes, I would very much like more information on your story. In the meantime, I'll try to educate myself about CIDP. Thanks, Brian.

 

[cinie24]

Help me please to understand

Hi, I am new to this site, I've been doing a lot of reading and I have a few questions. My good friend was just told that he has bulbar ALS. I have heard several things as far as the speed of this disease. Now, I have a video made in June of 07 and he was fine, talking fine, then on the same tape we went to the lake on Sept 1 of 2007 and you could not understand him - he was slurring real bad and he had just started choking on things like eggs and such. He can still talk in the mornings and I can understand him but as the day goes on it gets hard to understand him. Now, he was told a few days before Christmas that this is what he had, he has done the whole Lyme test and one come out positive and one did not. Both were western blot test. We went riding dune buggies over the weekend,which is 4 wheeling, yes he was the driver, and I did notice that he was having problems with his hands and arms now. Is this fast or what? Please help me understand because I hear that it must be something else because it is moving to fast, he is not have trouble with his legs or anything else. I am hoping and praying but all I can do is sit and watch and it is driving me crazy! I guess I am really wondering if he is going down hill to fast or what?

 

[CindyM]

Hello Cinie- so sorry to hear about your friend. Often folks look for direct answers but the disease affects everybody differently so it is hard to be specific. The more you learn, though, the more you will be able to help your friend. You will find a lot of information by using the search feature at the top of this screen. And if your friend is ntor egistered with his local MD chapter you might want to recommend that. If his ALS clinic offers support groups, that is a good place to begin as well.

This disease is tough on all concerned. I am sorry you had to seek us out but we will help all we can! Cindy

 

[Tall John]

Speed of progression

Sorry to hear about your friend. ALS CAN move very rapidly, see some of my other posts - click on blue Tall John

 

[patricia1]

Hi, I am new to this site, I've been doing a lot of reading and I have a few questions. My good friend was just told that he has bulbar ALS. I have heard several things as far as the speed of this disease. Now, I have a video made in June of 07 and he was fine, talking fine, then on the same tape we went to the lake on Sept 1 of 2007 and you could not understand him - he was slurring real bad and he had just started choking on things like eggs and such. He can still talk in the mornings and I can understand him but as the day goes on it gets hard to understand him. Now, he was told a few days before Christmas that this is what he had, he has done the whole Lyme test and one come out positive and one did not. Both were western blot test. We went riding dune buggies over the weekend,which is 4 wheeling, yes he was the driver, and I did notice that he was having problems with his hands and arms now. Is this fast or what? Please help me understand because I hear that it must be something else because it is moving to fast, he is not have trouble with his legs or anything else. I am hoping and praying but all I can do is sit and watch and it is driving me crazy! I guess I am really wondering if he is going down hill to fast or what?

Has anyone mentioned myastis Gravis to him. Those symptoms are better in the am and after resting Pat