Hi Butler,
Hey Laura, thanks for the introduction! I would have jumped in sooner but did not see the post. I do have MMN but because of a change in insurance/pharmacy this Jan 1, 2012 I have not had IVIG since Dec 27, 2011. I had IVIG every two weeks for about 2 years and then every 3 weeks for the last 3. I started Jan 7, 2007. And because I did respond, ie did not get worse, my diagnosis was changed from ALS to MMN.
Since not having IVIG for about 7 and 1/2 weeks, I have been amazed at how quickly I have to some degree deterioated. So even if it seemed that IVIG was not working, I can tell you without a doubt it was. (Ironically I got a port put in my chest, in Nov. 2011 as I was "going to be on IVIG for a really long time.)
A few days ago it took me almost 5 full minutes to write my name, address and phone number on a little ticket stub, the pen kept slipping through my fingers. Also the "p" on the computer is difficult to push and I need to use my full hand to push it down. These are the same things that helped make it impossible for me to do my job after 36 years. I haven't fallen yet but the other day I missed the bottom stair and had to catch myself. My right hand cramps every few minutes when I am using it. Not so much when it is at rest. It just spases and pulls together. It does not hurt, just feels funny. Muscles on my right hand are still atrophied and I cannot move my baby finger much at all-worse now.
Fortunately for me, I have worked out at a gym and after 2 years I can walk fast in the gym where I know the floor and I totally focus. I stumble if I talk or look around. The treatment let me do this, I could never have done it before IVIG, and now so far, I can continue even without treatment and that is again such a blessing.
What IVIG has done for me is really slow down my progression. It allowed me to work out and I also lost about 35 pounds over the last few years. So getting treatment and doing what I could to lose weight and exercise have been the best things for me.
I hope I can fix things (money :razz
and get back on treatment and I hope it works well for you. Best Wishes, Peg
Peg