Ike & Treatment update

September 17, 2008 at 12:27 pm

[B]1st things 1st.[/B] [B]Ike Update:[/B] We survived Ike quite well considering (Thanks and Praise to God). Our home was spared. We have a section of fence down and a few young trees that will need to be straightened up again. We are still without electrical power, but have water and gas. We ate our soup by lantern light last night on the patio. The Lord blessed us with a cool front and it was 63 degrees last night so we slept comfortably. Thanks for all the prayers, concerns and thoughts for us. The immediate coastal area has been devestated. Keep them in your thoughts and prayers.

[B]Plasma Exchange update:[/B] The effects of the booster PE lasted about 8 days. I had a PE yesterday and have another one scheduled for this afternoon. My treatment regimine is: 2 back to back PEs every three weeks.
Didn’t see much additional improvement from the booster PE (maybe some improvement in my calf extension physical therapy), but didn’t regress much either. The first symptoms I seem to have as the PE wears off is sensory degeneration in fingers arms and feet and an inflamatory “heat” in my knuckles and feet (if that makes sense). My right foot drop gets a little worse as well.

The sensory issues and my overall strength seems to get better very quickly after the PE.

I suspect “OldLincoln” is correct that loss of intrinsic factor is an issue a lot of us face. I’m convinced that either the virus or the antibodies that caused my CIDP destroyed my ability to produce intrinsic factor as well and so intramuscular B-12 injections are critical to me to get the B-12 for myelin repair to take place.