CIDP Patient in Texas

May 22, 2009 at 6:31 pm

Hi Jamie Lynn,

I was diagnosed with CIDP March 2008. I live in McKinney, TX. I see Dr. Alan Martin at Texas Nuerology in Dallas. I started IVIG in April 2008. I have been having load dose IVIG every three weeks. Next month we are going to wait four weeks but keep the load dose. I am anxious to see if I can extend my treatments out to the point of not needing them.

Last year at this time I was desperate to hear something positive. I just knew after a few months of IVIG I would be back to normal. I actually refused to read this forum at that time because it seemed people wrote about many problems and I was overwhelmed with the length of time people had suffered with CIDP. I finally joined the forum in August and have read it faithfully and learned a lot from the people who post here.

I do want to give you some encouragement. Although I am not back to normal, I am now very functional. From everything I have read or been told, at 18 months of treatment you have usually reached your maximum recovery. I am hoping to return back close to normal by that time. I actually had made a great deal of improvement by November of last year. Prior to that time everything was extremely hard. I am still ever so slowly improving.

I have just received a notice of a GBS/CIDP Support Meeting on June 6th in Dallas. The meeting place is Texas Scottish Rite Hospital. The contact person is Deborah Plimmer 972 298-6877. I have not attended one of these meetings. And I have a conflict with this date also. But, this is something I have wanted to attend and you might find very beneficial.

Please let me know if you have any questions you think I might be able to answer.

Donna M