No IVIG

Well, I guess I won't be getting that Ivig that I had been hoping for for so long. The neurologist at Virginia Mason hospital concurred with the neuro at the VA that I had Upper Motor Neuron Disease and as such the treatment wouldn't work. I always wonder if they ever get this particular diagnosis wrong. At least now I can save my money getting duplicate "treatment" at this private hospital. I think I will be dropping my Group health coverage ($94 a mo.). On the upside I am sooo grateful that while my symptoms that I've been dealing with have gotten more pronounced (weaker) over time at least they haven't spread. My heart really goes out to all here worse off than I. I think (And pray for) about you all the time. By the way, ABC had a great special about ALS & Muscular Dystrophy Sunday night. They raised 52 million!

I am sorry. I know you were hoping to try it. Cold comfort but you know it is not an easy or risk free treatment so if it was not going to help you are spared that. But it is a loss of hope and that hurts. May you continue to progress slowly until a real answer is found

Ah, Nikki? I think you mis-posted this.
I know a mod who could help!

Thanks Greg
I had created for Music as his post was buried in someone else's thread then replied to it and that is what happened. Guess needed to go out and back in. Live and learn!

Music, did they do blood tests to look for antibodies seen in Multifocal Motor Neuropathy? That form of Motor Neuron Disease does respond to IVIG.

Diane H: I know that my gm-1 antibodies number wasn't high enough to consider it in the MMN range but I found out later that that number only affects about 40-45% of all patients.