Thanks so much for writing. It is encouraging to hear from someone who understands the unique path that I'm on, but I'm sorry you have this disease as well.
As far as I can tell, my symptoms are symmetrical. It all began very quickly and has steadily declined. At first, it was mainly the sensory (pain, numbness, tingling) and the weakness was not as obvious. I discovered early last summer that the reason for the shortness of breath I'd been experiencing was because my right hemidiaphragm is paralyzed.
I am awaiting insurance approval for IVIg treatment. The initial plan is for me to have it over two days for three months in a row and then re-evaluate. I glad to hear it has gone well for you - the horror stories on the internet have made me feel a bit apprehensive.
I noticed you're from NJ. My wife and I grew up in NJ. After living for a season in VA and MO, we settled in PA 17 years ago with our four children.
I'd love to connect further with you by phone or email.
Thanks again for your response. It's good to know someone else "out there" is dealing with this. The "very rare" status of this disease/condition seems so isolating.
My best to you,
Lancaster County PA