Reply To: IVIG/treatment and symptoms

February 28, 2012 at 8:49 pm

Thanks so much Dawn Kevies Mom!!! I REALLY appreciate you taking the time to respond, and do the math too! 🙂 You sure are knowledgeable about all of this! I am going to talk to my dr about doing a schedule like you mentioned.. I just feel it worked SOOOO well that 2nd time that it has the ability to work well again! I do feel like I noticed more of an improvement starting yestserday evening.. (I wanted to crawl out of my skin and couldn’t hold my arms up or hardly walk a few days ago).. and that thankfully all went away!! Pheww! Hopefully my dr will be ok with me suggesting a different plan!
It is defintely overwhelming.. I try not to ever complain or have never said it’s not fair etc.. since I thought it was ALS from the get go.. I know it could all be WAY worse! Whats important to me is that I am around for hopefully at least ten years but hopefully many more to watch and teach my kids as they grow. I have always been super busy and go go go.. so no doubt this is hard, forcing me to slow down, and without family around, there is A LOT of responsibility on my shoulders, especially with being the breadwinner. I know I have to put this and my health first, but I don’t know what we would do if I loose or can’t work my job.
I am appologize for my posts/questions being all over the place, I type like I talk- in one run on sentence:) I think the hardest part of this all is that I still fear the whole ALS thing.. though I can see how that could be an irrational fear at this point, In the back of my mind I can’t shake it.. maybe its PTSD from the first dr who told me that’s what he was concerned about!
I am also going to talk to my dr about doing the home health thing.. that sounds WAY better than what I have been doing.. HOpefully the home health nurses can get hard IV’s!!! thanks again, I appreciate it!