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  • Hello back to ya,

    Thanks.....I don't know, to be honest, exactly what IVIG is. I do know her CK level was high, don't have the numbers handy. I desperately want her to keep trying to find a 'no' to the 'yes' that she thinks she has already found (if that makes sense). But I can't force her to make any more appointments. She just thinks it is hopeless, and does not want to waste any more time going to the Dr.s. I know that sounds terrible, but what do I do.....tie her up and drag her? She prefers to continue working for as long as she can.....yeah, by then, it may be too late to find something else's a dilemma I'm facing.....don't know how to change her mind.....she gets upset when I bring it up??!!
    Thank you, notme. I posted on the other thread, but it went to moderation. In that post, I explained that we (my wife and I) had a lengthy conversation after I read your post to her advising us to keep trying. She [bottom line] is not willing to go through any more of their tests, especially the emg's, and those are the very ones that seem to hold the 'final answer'. Her view is that she has something similar, if not als. They cannot tell her what the 'other' thing is, so she wants to just keep going as long as she can, and not have her remaining time be defined by this disease (as long as that is possible). I truly appreciate your help and advice. I also read where you have been falling, please be careful, and try to get to Tampa. Thanks again, stay tuned.
    Hi, hoping that you and the kid are feeing better. It's been an awful flu season. So far I've been lucky( also had flu shot at Clinic)
    Hi,I found in this forum about your message that a woman with ALS gave birth to a healthy child. So do you know some woman with ALS hope to be pregnant or has been delivered successfully?
    Hi Notme,

    Thanks for you responses to my first posts. I have now read several of your threads which are very valuable. I came to the forum looking for people who have travelled a path similar to the one I have started on. It seems you are one of those. Have you documented anywhere a description of how your disease presented and then progressed and how you managed your problems. If not, don't worry. i will post questions as they arise. However I am interested in your story if it has already been documented.

    Thanks again

    Course you are invited. Will see if I still have your email and send you the details. No one was really invited it just kind of grew from nowhere. Yay
    Hi Patty, how are you and your daughter getting on? I hope her dental issues came right. Anymore book sales? I have started painting which I love. I am not very good and an trying to find my style. I am not very imaginative so still base my paintings on prints that I find. One day I will find my own voice through paint, like you do through words.
    Hi patty,i just wanted to pop by and apologise for offending you.
    It has really upset me that i offended you,i did not mean the way my post read........i did post after yours.
    You are so dear to me,i have ofton worried about you with all the problems you have had and i admire your spirit and also add the valuable contribution you make to the to upset you upsets me also.
    I still do all my competitions,if i do win any prize i always think i will split with family and wont forget you..........i have a few moto's.........".who dares wins" and "got to be in it to win it"
    Hope we are ok (((hugs)))caroline.
    do you know exactly where that ALS loan closet is located? Port Orange is about 5mi south of Daytona Beach. Tampa is too far for me to go to see a neuro. Even Orlando's overa hr from me. since there's really no good meds or a cure i figure the neuros for diagnoses then thats it. what else can they do for you? never hear anything about groups or meetings for ALS here or in this area.
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