All,

Thank you all for your prayers. Wendy and I give thanks and praise to God as we survived Ike well. Our home was spared and sustained no damage, but we are still without electrical power.

Thanks for the recommendations for Cincy. My mouth is watering for the BBQ and pickles.

If you like steaks I recommend Taste of Texas for Houston. It is located on the south side of I-10 just inside Beltway 8. The steaks are aged and melt in your mouth and the salad bar is superb. My favorite is their onion soup. We ate there last night. I had heard that the restaurant had prepared and delivered 250 meals for the emergency responders at one location. The menu is a little pricy and usually they are packed, so plan for a wait. THey do have free tea, popcorn and nacho chips while you wait (just don’t eat so much you spoil your appetite)… 😀

Gary

[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.

Gary

Cheryl,
We have a trip planned to Cincy the week of the 21st. Do you have a recommendation for Cincy?

Emma, thanks for the offer. We have evacuated to our son’s home near Austin. We left under a mandatory evacuation that was imposed at 10:00pm last night for our community. Our home is 10 miles from the beach at 21 feet above sea level (yikes Ike). I posted a prayer request…

If I have a home and computer to return to, I will be looking for Cheryl’s reply…

Gary

I visited with the neurologist last Friday afternoon and had a “booster” plasma exchange. The PE didn’t wipe me out as much as the initial PE series, thanks be to God.

The neurologist was very encouraged by my response to the first series of plasma exchanges saying he would have been pleased with a “factor of 1 improvement”, but my actual was a “factor of 2”. It had been 3 weeks since the first series of plasma exchanges had completed. The improvements continued for about 2 weeks after the initial PE series, but I had started to regress during the third week (last week), so the neurologist didn’t even see me in my best condition. 😀

The blood center doctor said that typically 2-3 weeks is the initial duration of the plasma exchange effect, but that the duration of the effects typically gets longer. So we hope to extend the improvement cycle to 3+ weeks.

So unless my improvement cycle gets shorter or I have a set back … the neurologist plan is to [B][U]continue treating with plasma exchanges alone [/U][/B]and prescribed 2 plasma exchanges on consecutive days every three weeks for the next 4-6 months. :confused:

We discussed IVIG, but the neurologist was so encourage by my response and progress with PE alone that he recommended holding off for now.

I would like to hear responses as to anyone else’s experiences with PE alone and your advice/wisdom on PE alone success for CIDP and the plan of holding off on IVIG (especially those of you who are being treated at Johns Hopkins for their neurological renown).

I am also undergoing physical therapy and it is scheduled every Wednesday and Friday morning from 7:00am until 8:00am. The PT consists of a short stationary bicycle warm up, a mild workout with leg weight machines, balance, moving a towel on the floor with my foot, and squeezing a clay putty and grip device.

I am scheduled to see an endocrinologist for my diabetes diagnosis. My glucose tolerance numbers were not significantly out of normal range (104 versus 100), so I’m hopeful we will find out that this diagnosis is incorrect.

Thanks for all your prayers, advice and encouragement as I continue to battle this CIDP.

Romans 8:18

Gary