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Old 11-05-2010, 05:00 PM
NANCY W. NANCY W. is offline
Junior Member
 
Join Date: Sep 2009
Posts: 20
10 yr Member
NANCY W. NANCY W. is offline
Junior Member
 
Join Date: Sep 2009
Posts: 20
10 yr Member
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Quote:
Originally Posted by wyngaerde View Post
My husband was diagnosed in 2009 at age 55. His symptoms began in 2006 with numbness in his toes and, like yours, has now progressed to numbness and muscle atrophy in his feet and calves. Balance, weakness, and tripping are also his biggest problems. Since June, 2010, he has developed drop foot in both feet and is wearing orthotics on both legs. We recently saw a new specialist at Barnes Jewish Hospital in St. Louis who strongly recommends rituxan therapy. He said it most likely will not reverse the symptoms but should stop the progression. At this point Blue Cross is unwilling to pay for the treatment. We are concerned about the side effects of the treatments, but he would like to stop or slow the progression.

I was so thankful to see your letter. We don't know anyone with this illness. I was happy to read that the treatment you had has stopped your progression. Are you continuing to have the chemotheraphy treatments? Are you familiar with rituxan? We would appreciate hearing from you and hope you are continuing to do well.

Jill Tucker (aka wyngaerde)
Hello, Jill. I have posted here a few times but not since I had the Rituxan treatments in September, 2010. My dr. at OSHU has told me that nerves DO HAVE THE ABILITY TO REGENERATE especially those which were most recently attacked. (I experienced improvement last year when I was given plasma pherisis treatments.) At the very least, the Rituxan has halted further nerve injury in many cases. So I am waiting to see and hoping for the best.

Try contacting the Rituxan manufacturer - they have a program to provide the drug if you qualify.

Hope you will post further news of your husband's situation.

Regards, Nancy W.
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