Autonomic System Testing and PLEX Update

I had Autonomic Nervous System (ANS) testing last week at Vanderbilt. The good news is my autonomic nervous system is intact and is not causing my breathing, heart rate, and blood pressure issues. I still have the Small Fiber Neuropathy, but it has not damaged my ANS.

One Week after PLEX, October 13, 2012

I am slowly gaining more strength and stamina which is great.  My aching is not as bad as it was a few weeks ago.  My headaches are much better.  It seems the new preventative medication is helping--I hope it continues to do so.  My double-vision and breathing issues are still not much better.  Overall, the plasma exchange (PLEX) was not as bad on me this time compared with the PLEX and chemo together in April 2012.

Coming Home Today

Cathy is exhausted and did not write a blog yesterday. She is resting this morning so I am writing. Right now, I am waiting on my last plasma exchange. I think they are beginning to take effect and I feel stronger. I have had FFP (fresh frozen human plasma) twice this week and had a slight reaction both time.

Cathy's Blog, October 4, 2012

October 4, 2012

Day 4 at Vanderbilt

I spoke with Lynda Clark Wednesday afternoon and I related that we didn't have a regular room yet. We have been in the surgical transition area since Monday. Lynda asked me if it was okay if the choir had prayer about a room for us and I said "yes." Wednesday night at 8:30 we received the good news that we had a roon! I called Lynda Thursday morning and told her. She said, "that was about the time they were praying!" God answers prayers!

Cathy's Blog, October 3, 2012

Day Three

Wednesday, October 3, 2012

We are not in a "regular room yet." I am kind-of sorta irritated, but I understand that there are others that need more care than we do. So, all in all I guess I shouldn't be complaining.

Cathy's Blog October 2, 2012

Day Two at Vanderbilt

October 2, 1012 6:00 PM and we are still in the same Surgical Transition Unit room because the hospital is full. The daytime head nurse called to find out about our room but there are 4 neurology patients waiting for the same rooms. We should have one tomorrow.

Cathy's Blog, October 1, 2012

End of Day One:

October 1, 2012 began early this morning, 4:00 am to be exact. As usual, we had packed the car the night before, except for our toiletries and last minute grabs. Kerry was allowed to have a cup of coffee, so I didn't have to feel badly about drinking mine in front of him.

EGD Update

The EGD went well yesterday.  There were no obvious problems with my upper GI system--things looked good.  This is just further evidence that my problems are nerve damage.

2012-09-26 Pre-PLEX Condition Assessment

I will have another five days of Plasma Exchange (PLEX) very soon. Here is an assessment of my current condition as documentation for my physicians.

I Knew Better than . . .

I Knew Better than . . .

A week ago, Cathy and I had BBQ for supper about 6:00 PM. I am a BBQ fan--true Georgia pork BBQ. It was good and I really enjoyed it. But, I knew better.

Doctor Appointments and Tests

Here is an update of my recent medical appointments.

Quick Update

Things are about the same, except I have been dealing with nausea for about a month.  I have several doctor appointments and test in the next couple of week.  I will do a longer blog when I know more.

Cathy's Home-Fix-It Shop

Cathy has been working hard around the house for the last couple of months. She has painted the vinyl shutters and exterior light fixtures black, the front door red, the porch grey, and put a fresh coat of caulking and white paint on the rails. She did a good job while I supervised. I can do about fifteen minutes of activity before my body totally stops me. It takes several hours to recover.

Same 'ole Thing

Nothing new to report.  Have a great 4th of July.

Writing for a Guest Blogger

I was asked by a fellow MG'er and Blogger to do a guest blog for her site.  During June, Debbie is focusing on MG Awareness month by posting the stories of various individuals with MG.  She is doing a great job.

Click here for a link to her blog.

This was my post for her blog.

June is MG Awareness Month

Same

Things are about the same for me.  I am now on 15mg of prednisone daily instead of 20mg.  We shall see what happens.

New Video

 Here is my latest video. Click here to watch.

More of the Same

Things are essentially the same with me except my ulcers are better. I feel very tired and cannot breathe well at all. Any exertion really causes me problems. I still cannot walk on my heels or lift the pennies. Things could be worse.

More next week, or earlier if there are any changes.

Thanks again for your prayers and support.

Status Quo Again

Things are about the same. Still cannot walk on my heels or lift the pennies. The Rituximab has caused a lot of mouth and throat ulcers--they hurt! Finally trying to reduce prednisone. This way, we will know if the Rituximab is working.