Reply To: CIDP and facial/mouth numbness
Hi Jim. (John up here in Acton):
I have been seeing Dr. Lewis at Cedar.
As evident in all the various posts, is none of us are alike symptom wise. This is one tricky disease.
I had PE during my 2nd stay @ Henry-Mayo and it allowed me to get well enough to walk again and head on home. Then the most serious of relapses at Scripps for almost a month. One of the Oncology doctors there set me up with a regiment of Retuxin treatments and that really had me felling better and on my way home in a matter of a week. My current physician at Scripps, while I asked for it, has been extremely reluctant to use Retuxin. I am walking well and fairly stable except for the occasional drunken stagger. I believe Retuxin is for the severe, hence my not receiving another dose.
I should probably start a new thread with the whole story. There are a few oddities beginning around 2011. I will try to post this evening.
Thank you Jim for your in-depth knowledge and information you give on this forum. It is indispensable for the inflicted.