Hi Michael Jay
So you've had the rituxan therapy. How bad was it? My doctor said not to try it until either I had numbness up to the knee, or muscle weakness in the ankle (like foot drop). I've read accounts of people shivering and shaking throughout and other nasty side effects. Although it's supposed to slow down the overactive Igm protein so the nerves can heal for awhile. So far my neuropathy is limited mostly to the feet and mostly sensory. No balance or fatigue issues. What do you mean by 1 1/2 days in the gym? Do you have a particular exercise program?

sorry for the delay, I'm back at teaching..

the side effects were pretty intense with the rituxan but not so bad.
the issue i have is that there isnt a clear indication of long term efficacy/
with considerable risk I think.

I would look into the research a little more before.

I am about the same as you mostly in the feet.

I am looking at oral tolerance approaches now with bovine myelin
have you checked this out??
be interested in hearing more from you given we share the same affliction

Hi again Michaeljay
I never heard of bovine myelin. It sounds promising. I keep thinking if the doctors can't stop the blood from producing too much IgM protein, and they can't stop the protein from attacking the myelin, then maybe over-building up the myelin will at least make it resist the anti-body attacks better. So I have been taking methyl B12 and also lecithin which is supposed to build up myelin. Can't decide if it's helping. I don't seem to have as much burning and tingling and buzzing in my feet, but the numbness keeps progressing, which I assume means the nerves are slowly dying. My next try is going to be anodyne therapy. It's supposed to stimulate the nerves somehow. You said you can't type. How does it affect your hands?

again long delay sorry,
Im interest to hear about leichen and B12/

I will look into this/ I am doing alot of flax oil, primrose oil and fish oils
as well as a heavy exercise program/ typing is slow tingling fingers and ataxia

Im still doing well but its slow and progressive/ feet numness and burning is hard at the end of the day/

i am going to look at Interferon as well/ ive heard some good/bad stories


my neuro is just watching and waiting??
hard to know what to do
any news at your end

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

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.

Actually, in my experience, rituxan really isn't very toxic, especially in comparison with some of the other immunosupressants that are truely horrendous. I have had many years of iv cytoxan which supresses the entire immune system (basically it's chemotherapy) and have been delighted to switch over to rituxan about 2 1/2 years ago. Rituxan is very much more specific, it just depletes my b cells rather than hammering my entire immune system, which is just great. Cytoxan made me really really ill, rituxan, although it is still a form of chemo, doesn't, as it is so targeted and just takes out one part of my immune system.

Obviously no one would want to have any of these treatments unless they absolutely have to, but for those who have to then rituxan is definitely the way to go although it is very expensive and difficult to get funding for. Everytime I have it (two infusions) it is $20,000.00 which is pretty out there really. My b cells are again on the way back, so I will be having another round of rituxan sooner or later.

I don't have Anit-MAG, but have lupus which is also an autoimmune condition and has given me a lot of problems with PN (sensory and motor). B cells are involved with the production of antibodies which then attack me, so depleting my b cells really helps.

hth

raglet

I went to the Neurologist 5 years ago with the burning feet. I was diagnosed with idiopathic neuropathy. I also was found to have monoclonal gammopathy of unknown significance. MGUS. Yes, there is a direct correlation between MGUS and PN. I have to have my blood tested once a year, to make sure that my protein level doesn't rise. It can turn into multiple myloma. Not a good cancer. So far....my level is at .01, and it has stayed that way for five years. I can live with the burning pain.....