Welcome Geoff

January 18, 2009 at 11:18 am

[QUOTE=geoff_c_lewisuk]I have just joined the site and not sure if were talking about the same reatment but I have Antimag Neuropathy diagnosed about two years ago now after a few years of doctors telling me to do foot exercises etc yeah right.
Last year I had a course of Retuximab treatment it seemed to help me over a long period of months but im now awaiting another course being planned by my specialists.
Love to chat to anyone suffering this same problem.

Hi Geoff
Welcome to the forum!! When I read your posting this morning, I couldn’t believe my eyes. You and I are about the same age, discovered the neuropathy about the same time, and are on the same treatment – Rituxan.
There are a few others here in the GBS/CIDP forum who have the same ailment, and have been undergoing the same treatment, but we are at different stages. Nevertheless, the first thing I’d like to say is that they, and many others on the forum have been incredibly supportive and the knowledge I have gained here has been fantastic. It is very important to know exactly what is happening so that we can converse with the doctors. The disease is relatively rare and so many GP’s etc, are totally uninformed. Your mention of foot exercises, etc. reminds me of my first complaint to my family doctor who just shrugged it off and made me feel like I was wasting his time. Unfortunately, time is important, and I beleive that I lost about 6 months because of him…that was 6 months of irreparable damage.
Briefly, I noticed numbness in my feet about August 2006, sought professional help in January 2007 when it was getting much worse, was diagnosed in September 2007, confirmed with anti-MAG testing in October 2007, and received 4 infusions of Rituxan in December. Since then, I’ve had 3more infusions and have noticed a great improvement. My hands are now back to normal, I have regained some strength in my lower legs and feet, and my balance is much better. Still, there is some numbness in my feet which I hope will gradually be reduced with time and perhaps occasional further Rituxan treatments.
What I’ve learned from the forum includes the cause of the disease, what Rituxan does, etc. Other subjects include insurance coverage for Rituxan treatments, which is hard to get and which I have not been able to achieve.
Where are you at in the nerve damage. Are you able to walk? Are your hands affected? Do you have any pain?
Certainly Norb and Allaug will also also glad to hear from you and compare notes as we all try to battle this disease. You can read some of their posts on this thread.
Again welcome Geoff. You will find all kinds of help here on the GBS/CIDP forum.