Hi Marilyn,

I have seen a neurologist at Virginia Mason Hosp. and I'm trying to decide which way to go with treatments. I was diagnosed about 8 years ago at the U. of Iowa Hosp. in Iowa City. I received IVIg for several years with some success, but it seemed to become less helpful over time. I would like to start Rituxan but will need to convince my insurance co. that I need it. Dr. John Ravits is the neurologist I am seeing.

Hope to hear from you.

NancyKay (Lummi Island, WA)

Hello, Marilyn: I have the same condition and my neurologist just prescribed rituxan but I find that it is not covered by medicare. Did your insurance cover the expense? Or did the UW cover it? Will be very interested in your reply and hope you are still on line.

Thanks, Nancy Walker, Oregon

Hello, Marilyn. I am in a similar situation and was very interested that you were being treated at the UW because I may be moving to Washington. Are you still on Rituxan? and with Dr. Weiss? Are you still having treatments every 10 weeks? I am still in process of trying to get rituxan and have been told its lasts from 6 mos to 1 year. Will be very interested and appreciative of hearing further from you.

REgards, Nancy Walker

I have recently been diagnosed with MAG neuropathy, are you still out there and interested?

My symptoms started 3 years ago. I had numbness in my feet and big toes. I went to my family Dr who referred me to a neuroligst. He did a nerve conductance test that showed neuropathy in both legs & both arms. He ordered a spinal MRI (normal) and blood tests (normal). He said since my general heath is good at 65, no treatment and call him if symptoms worsened.
I was not satisfied with his assesment. Since I live near Johns Hopkins Hosp., rated best hospital in US for Neurology, I scheduled an appointment. The doctor was much more thorough in his exam and the nerve conductance test was much more envolved. He also did the blood test that showed the elevated level of Igm protein and explained the condition on anti-mag neuropathy. He reccomended that I see a hemotoligist for further testing. I
saw an excellent Dr at Mercy Hosp in Baltimore who put me through a skeletal survey, and a bone marrow biopsy. Both normal, no luchyemia. He suggested that I try the Rutxin infusions. I had a 4 week cycle of infusions, twice in 3 months. There were very little side effects.....a few chills, drowsy from the Benydril. It all goes away after the infusion. There was no improvement from the 8 infusions. I saw another Neurologist at Hopkins. He has been there 17 years and has traveled the world with Drs about this condition. I would imagine that he is a leading authority on this disease. My feet are getting worse, I see him again in June.

What has happened with your Neuropathy since June? Are you still taking Retuxin infusions or anything new. I was just dx. Went to Hematologist and Rheumatologist, Neurologist. All feel strongly I should start infusions. Where are you in your therapy and condition?
Sincerely ,,,,Edlestep

It is disappointing to hear you have had no improvement with the Rituxan. I guess when you go in June to John Hopkins maybe he can tell you more since he is the authority. Keep me informed about your outcome and how you are doing. Did you get insurance coverage for the rituxan infusions? My insurance initially said no but 3 doctors have written for review with letters of medical necessity. Hope I can get the treatment.
Take care
Edelstep

My symptoms started in Jan 2011. Numbness, weakness, balance gone, falling down both legs to mid calf and fingertips both hands. My neurologist made dx and sent me to Mt Sinai New York for second opinion after I failed the emg test. He said Rituxin no plasmaphoresis no IVG. In September 2011 I had the 4 doses a week apart tolerated well. With 6 months of treatment hands fine. Only numbness in both feet below ankles. No pain no balance problems or weakness. I travel, walk, drive and go to my neurologist every 6 months. The minute if I start to have progression of symptoms I will call him and have Rituxin again. The choice is being wheelchair bound. I do exercise. If you don't use it you lose it. No other meds were given. No steroids. I don't know how long this remission will last but I am enjoying every day. Dx age 65 now 68. The key to the treatment working is to have it done as soon as you can.

Congratulations on your remission with Rituxan! I had hoped for the same but found no effect. I am currently back on IVIg for 2 consecutive days every three weeks. I am also exercising 3-4 days/week doing water aerobics/Zumba/Palates/etc. at a club to strengthen my core and legs in order to preserve my ability to walk and improve balance for as long as possible. Granted, I'm surely not at the top of these classes, but I am trying. I do these classes in the mornings as I find that I am too tired to do much later in the day. Insurance is paying for my IVIg treatments thankfully! I am feeling pretty good. I feel that the exercise also benefits my mood as depression has been a problem while I have had anti-MAG. I am also taking Cymbalta, which helps. Intention tremor of my hands has continued to be a problem that does not allow me to work. I see a hematologist/oncologist every 6 months-1 year as I have abnormal levels of M paraprotein that can get high enough over time to become a condition called Waldenstrom's Macroglobulinemia which needs to be treated. My uncle died of this at the age of 49. I hope you are continuing to do well.
Blessings,
NancyKay

Hello. I am an antiMAG person too - diagnosed 10 yrs ago with monoclonoal gamopathy but was never offered any treatment until this year. Slowly it got harder to walk, balance got worse, etc until I insisted on seeing a new neurologist. Was referred to Oregon Science & Health U & Hospital. Good news - I've been on plasma pherisis for 4 months and have seen steady (if slow) improvement in my walking and steadiness. Have had total of 13 apherisis treatments given through a subclavian port, which is not a very handy thing to have (no showering, swimming, kyacking, etc) Neurologist at OSHU/Hospital now recommending treatment with Rituxan but is leaving the decision to me. I'm thinking I may stay with "the devil I know" and have a fistula installed in my arm for continued pheresis treatment. I will certainly be glad to hear from and any others with ANTI MAG experience.