Hi,
I just found all of you. I have peripheral neuropathy with numbness and gait weakness from toes to mid calf. I had MRI negative,electric nerve test (failed) and today my neurologist called and said I have Anti Mag Neuropathy and referred me to Dr David Simpson professor of Neurology who specializes in autoimmune neuropathy at Mount Sinai in New York City. I have an appointment Jan. 13, From what I am reading on this forum nothing really works as a cure. I don't have a problem with plasmaphoresis but chemotherapy is scary when they don't know the long range effects of some of these drugs. Many of you swear that Rituxan therapy has worked. Will insurance pay for this? $20,000 a dose seems overwhelming. Any improvement on holistic therapies like Lecithin and B12 or fish oils? Please reply...very confused but glad I am not alone.
Edelstep

Hello, Edelstep. After a couple of false starts, the nuro dept was able to get my treatments mostly covered. I believe it was coded as chemo therapy -- perhaps the secret is how your dr. or hospital codes it. Wish I could be of more help -- but the hospital didn't explain and I didn't ask. Good luck. NancyW

Hi Folks.
I am Mike from the UK (new member) I was originally diagnosed with Axonal Peripheral Neuropathy in 2004 and have been seeing a specialist Neuro doctor every year since that diagnosis. In 2008 after more extensive blood tests the diagnosis was changed to Anti Mag Neuropathy. He suggested I should have IVIG but I studied all the reports and decided against this. In December 2009 he suggested that I try Rituximab......this was not available on my private health insurance but he said he would apply for treatment through the National Health Service at Norwich University Hospital. After three repeat applications I was granted Rituximab treatment in December 2010. Treatment was for two 1000mg doses of Rituximab 15 days apart.
I am 70 yrs old and was not looking forward to this treatment but as it is the only product with any positive reports I decided to go for it !!
I was treated in the Rheumatology dept at the Hospital as a day case...arriving at 8.30 and getting all the usual checks plus a 1hr pre med with paracetamol, sickness pills, antihistamine and a Methylprednisone infusion. I was then started on Rituximab very slowly up to a maximum drip , as I had no side effects, which took 4hrs. The second infusion on 29th dec was exactly the same process but much quicker as they could speed the infusion rate.
At the moment I feel fine but have been told I will not know of any benefits for about three months.
To mention my symptoms....Difficulty walking and cannot stand without holding onto something or someone. Balance is the worst of my problems but added to that I have lost all muscle and feeling in my legs below the knees, some feeling in my fingers and have bladder and bowel problems.
Any questions anwered.........Regards Mike

Hello, Mike.

Glad to have one more person to compare results after Rituxan treatments. Please continue to post and I will too.

I've had symptoms for about 12 years but only impacted walking, balance, etc the last 5 years. Had Rituxan treatments in Sept '09 and believe I am seeing very subtle positive differences. Have exercised steadily to keep muscles in tone so that they will be in shape to work when the nerves are able to tell them what to do. Very simplistic language - but the exercise pays off in lots of ways, physically and mentally.

Hope to hear further from you.

Regards, Nancy W.

Hello Nancy

Have you had any further treatments of Rituximab since Sept 2009 and if so how many?

I was told that if I experienced some improvement I could possibly get a redose at approx one year interval. Anyway I will have to wait a few months to find out if it is working for me......keeping active at the moment although no muscle or strength in the legs. Brain is still very busy (I think).. Will keep in contact.
Best wishes Mike

Good morning. No, I haven't had any further treatments. after the first set in Sept '10, the neuro doc set my next appointment at 6 months, which will be this March. I don't know what tests they will do - probably blood work and manual testing of foot/leg strength. I think that I remember him talking about repetition after one year -- depending on patient's condition. I will be sure to post after the March appointment. Regards, Nancy W.

Hi Nancy,
Thankyou for responding. I went to Mt Sinai Jan 13. The Director of neurophysiology Dr David Simpson says I have classic Anti Mag nueropathy. He wants me to see a Hematologist because I also have family hx of antiphospholipid syndrome. I also have to see a Rheumatologist because I have severe Reynards syndrome. All of these are autoimmune disorders. Has anyone indicated that this neuropathy could be genetic? Could our children get it?
Also Nancy, How was your Chemo given? How long was the treatments? What were the side effects?
Thankyou so very much for responding. It is so great not to feel so alone.