Update...

[aobrien]

After reading posts from the other forums on this site, I am reminded of the struggles and the difficulty people face every single day who are affected by ALS. I have decided to delete this post, because it doesn't "feel" right. Thanks to those who replied, and my thoughts and prayers are with all of those affected by ALS or searching for answers for their symptoms. God Bless, Happy New Year.

 

[ktmj]

Fantastic news. From what I understand most GB folks live long and productive lives after that. There is a great GB forum out there but I am on my crackberry and can't post the link.

 

[CindyM]

Thanks for the good news, so to speak. I say "good" news because I have also heard that GB is manageable. But still in all, you remain a member of the rare disease club. Check in from time to time. Happy New Year to you, as well!

 

[awieleba]

what is GB? Is is GBS?

thnks

 

[planningguy]

April,

I believe so.

Happy New Year,

Robert

 

[crystalkk]

aobrian,

You didn't have to delete your post, us undiagnosed with on-going symptoms appeciate when someone gets a different diagnosed
it gives us hope. We are happy that it is something treatable.

Good luck and Happy New Year.

 

[laurel]

Curious as a cat

After reading posts from the other forums on this site, I am reminded of the struggles and the difficulty people face every single day who are affected by ALS. I have decided to delete this post, because it doesn't "feel" right. Thanks to those who replied, and my thoughts and prayers are with all of those affected by ALS or searching for answers for their symptoms. God Bless, Happy New Year.

Hi,
Were you diagnosed? From the posts following yours, I am thinking you were diagnosed with Guillain Barre Syndrome? Please fill us in--good news is always welcome. I remember reading your posts about Cipro side effects. Was it something related to that?
Laurel

 

[crystalkk]

Laurel,

How is you husband doing?

Happy New Year!

 

[laurel]

For Crystal

Laurel,

How is you husband doing?

Happy New Year!

Hi Crystal,
Happy New Year. Thanks for asking about my husband. His year was really up and down. Initial good response to IVIG, and then a couple of months of him losing strength in his hand again and some foot drop again. He is very fatigued and this has impacted tremendously on our life on our little farm with the horses. He comes to the barn but often can't participate due to fatigue. Of course I started getting scared about ALS again due to his lack of response to the IVIG and his neuro. saying he has a highly unusual variant of CIDP. But he did respond to his December dose of IVIG--so I am hoping that we will see improvements in the New Year. These diseases are so crappy and there are so many unknowns.
Laurel

 

[crystalkk]

Laurel,

I'm happy to here that he did respond to his December IVIG.
Did he gain the strength back in his hand and the footdrop totally went away, then for a couple of months lost it.
Try to think positive if they are continuing the treatments..... Maybe they need to up the dose or do them closer together.