Originally Posted by Connan (Post 651624)

Hi Nancy (and others in this group, I have read all your posts)

Like others here I was diagnosed with Anti-Mag peripheral neuropathy with IgM Kappa monoclonel Gammopathy. This diagnosis happen in 1998. I took IVIG therapy for 2 years but had some really bad reactions. The suggestion from the docs was to go on Cytoxin. At that point I decided the cure may be worse than the disease and just ignored the problems for 10 years. I am now age 72 and have been having balance problems, leg weakness, leg stiffness, and gait problems when I first get up or after I fall asleep in the recliner. the "boot" feeling is now to above my knees. I could rip off a toenail without any pain but if I step on a pebble, the pain is intense.

I decided to go to the Mayo Clinic in Jaxsonville, Fl to see if there was any new treatments that would not kill me. Both the neurology and hematology/oncology docs at Mayo suggest I go on Rituximab which they say is about 50 percent effective in controlling and reversing the neuropathy with little side effects. While it sounds encouraging, I don't see many posts where others have actually taken this therapy with good results.

I have some questions that hopefully there are some of you who could provide some information. It would be appreciated.

Is Rituximab working for you?
What are the treatments and how often are they repeated?
How much are the treatments and does Medicare pay for them?

Any info or responses would be greatly appreciated? I will certainly give feedback to this group if I decide to go forward with the treatments.

Thanks for listening.

Bob

Originally Posted by Marilyn Henson (Post 490629)

Hello,
I am responding with the hope I may be of some help to your Anti MAG health issue.
I have been under treatment at the University of Washington Hospital for aproximately seven years now with success. I became afflicked with tingeling, pain and numbness in the heals of my feet, weekness in my legs, and extreme tiredness. I spent many a nights with out sleep in the beginning.
I see a specialist at the UW hospital. I am under ongoing treatment with Rituxin IV's every 10 weeks. This has halted and also improved my condition.
My DR. is Micheal Weiss.

Originally Posted by NANCY W. (Post 658209)

Good morning, Bob. The neurologist at OSHU (cutting edge teaching hosp. on west coast) prescribed Rituximab for my condition but i am having the devil of a time getting it! Turns out medicare won't cover the expense (something over $50,000) for this application. Am now jumping through hoops to see if OSHU will assist with expense. I further understand that the mfg. of rituximab will assist -- but after the fact. I.e., patient fronts the expense and presents denial from insurance company and then they will pickup (some part of) expense. But you don't get any of this in writing. So -- If you can get it, i WOULD SURE GO FOR IT. Doc's second choice is medicine called Cellcept- not as strong, takes at least 3 months to see improvement, i believe it is taken orally. I am holding off on this for the moment, hoping to get the rituximab somehow. Will be very interested to hear further from you re your decision and its effect. Regards, Nancy

Originally Posted by Marilyn Henson (Post 490629)

Hello,
I am responding with the hope I may be of some help to your Anti MAG health issue.
I have been under treatment at the University of Washington Hospital for aproximately seven years now with success. I became afflicked with tingeling, pain and numbness in the heals of my feet, weekness in my legs, and extreme tiredness. I spent many a nights with out sleep in the beginning.
I see a specialist at the UW hospital. I am under ongoing treatment with Rituxin IV's every 10 weeks. This has halted and also improved my condition.
My DR. is Micheal Weiss.

Originally Posted by jrip (Post 628525)

I'm a 75 year old male and have had Anti-MAG demyelinating polyneuropathy for probably eight or nine years. It began with a numbness in my feet. I became aware of it trying to walk on beaches while hunting. My balance was poor. I began losing weight, mainly muscle. It was at this point that I was diagnosed with neuropathy. My neurologist put me on Cytoxin, which seemed to arrest it for awhile. Lately my balance problem returned with a vengeance.
I just returned from a visit to a neurologist at Virginia Mason, who told me after some tests that my neuropathy is quite bad. I walk now with the aid of a cane. He told me of a controlled study for Rituximab that concluded it is an effective treatment in patients with A-MAG-DP and suggested I consider it. Any benefits only last a year and, as one posting mentioned, it is so expensive I'm not sure my insurance will go for it. I'm trying to make up my mind whether to give it a try. Sometimes I have pain but for the most part the neuropathy's effect has been on strength and mobility.

Originally Posted by Connan (Post 651624)

Hi Nancy (and others in this group, I have read all your posts)

Like others here I was diagnosed with Anti-Mag peripheral neuropathy with IgM Kappa monoclonel Gammopathy. This diagnosis happen in 1998. I took IVIG therapy for 2 years but had some really bad reactions. The suggestion from the docs was to go on Cytoxin. At that point I decided the cure may be worse than the disease and just ignored the problems for 10 years. I am now age 72 and have been having balance problems, leg weakness, leg stiffness, and gait problems when I first get up or after I fall asleep in the recliner. the "boot" feeling is now to above my knees. I could rip off a toenail without any pain but if I step on a pebble, the pain is intense.

I decided to go to the Mayo Clinic in Jaxsonville, Fl to see if there was any new treatments that would not kill me. Both the neurology and hematology/oncology docs at Mayo suggest I go on Rituximab which they say is about 50 percent effective in controlling and reversing the neuropathy with little side effects. While it sounds encouraging, I don't see many posts where others have actually taken this therapy with good results.

I have some questions that hopefully there are some of you who could provide some information. It would be appreciated.

Is Rituximab working for you?
What are the treatments and how often are they repeated?
How much are the treatments and does Medicare pay for them?

Any info or responses would be greatly appreciated? I will certainly give feedback to this group if I decide to go forward with the treatments.

Thanks for listening.

Bob

Originally Posted by Granacki (Post 146815)

So glad to hear some anti-MAG responses out there!

Here's what I know so far about anti-MAG. Glentaj is exactly right. It's an elevated IgM protein in the blood that produces anti-bodies that attack the Myelin sheath. I've been told it is mostly sensory, but can develop into a motor-neuropathy. The doctors don't know why a person's blood all of a sudden starts producing too much IgM, or why everyone with the excess protein doesn't get neuropathy. (Rina-- this is a special blood test not in your usual workup). The same elevated protein is also associated with scary cancers like multiple myeloma (bones) and Waldenstrom's macroglobulinemia (blood cancer) so they do tests for those too. I guess I should consider myself lucky since after months of tests at the University of Chicago all the really hideous things were ruled out and I was left just the way I came in -- with numb, tingling, and burning feet, and no cure or treatment.

For me, it started with numbness on the bottom of my left foot and in my toes, and was exacerbated when I walked a lot. (I like to walk miles along the lakefront). I assumed it was a mechanical issue and I went to orthopedic doctors first, who diagnosed it as metarsalgia (basically inflammation from fallen metarsal arches). I argued with a string of orthotists whose expensive orthotics had no effect. Then, anxious to do something more proactive, I wrongly had surgery for a modified bunionectomy and the insertion of screws in my foot to keep the bones from moving around too much. Of course the incisions killed off even more nerves that never came back. Then I tried a podiatrist who specialized in neuropathy who wanted to do more surgery to release what he said was tarsal tunnel (a nerve compression). All along I kept asking these doctors if I should see a neurologist and they said, no, not necessary. Finally after a chiropractor, acupuncture, and chinese herbs, I found my own neurologist and got my diagnosis. I go back tomorrow for a 6 month visit.

From what I hear from CIDP sufferers, another auto-immune neuropathy, that condition sounds far more debilitating. The only positive about CIDP is that it does seem to respond to some treatments. Steroids have no effect on most anti-MAG, nor do they seem to recommend the IV plasma exchange treatement. The only treatment that shows some benefit is Rituxan but since it's so toxic, they wait until you're in really bad shape before trying it.

What little information I have seen says anti-MAG shows "little progression over long periods." With a heightened awareness of every new twitch and buzz and sting moving slowly up my feet for the past three years, and now above my ankles, I'm trying to grasp what slowly progressive means. I'm also trying to imagine how I can walk if the muscles still work but I can't feel any sensations below my knees. I've always had extremely high energy levels, do lots of different things including run my own business and take care of a family, and am pretty fit and otherwise healthy for being almost 60. This anti-MAG isn't really slowing my hyperactivity down too much but it does make walking uncomfortable. I'm just wondering how much longer do I have before it gets really bad, and how bad will it really get?

Originally Posted by NANCY W. (Post 696062)

Hello, Bob. It has taken months to get authorized, but I have now had the first 3 (of 4) infusions of Rituximab. I had a reaction like hives during the first infusion, but no further reactions on 2nd and 3rd. My 4th and last will be this coming Thursday. I will be glad to share my progress (hopefully) in the next few months. Fingers crossed.

I hope you are still online here and can let me know if you decided to take the Rituximab and if so, how its going for you. You and I are about the same age and seem to have traveled the same symptom and debilitation path.

Regards, Nancy W.

Hope to hear from you.

Originally Posted by EDELSTEP (Post 730117)

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

Originally Posted by NANCY W. (Post 731386)

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

Originally Posted by NANCY W. (Post 731386)

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

Originally Posted by NANCY W. (Post 736481)

Good morning Jakatak. Thanks for posting the article on MGUS.

Just a word about being proactive about your diagnosis.
I was diagnosed with pn 15 or so years ago and went once a year to have a blood draw as directed. Diagnosis never changed but I slowly lost muscle use and feeling in legs/feet. Two years ago I finally insisted that i get a new neurologist and discovered that I had a condition (antimag) THAT COULD BE STOPPED AND IMPROVED.

I post this because I think there are probably lots of folks who aren't getting help because they aren't aware of this fairly new science.

Originally Posted by Joebuddy (Post 507422)

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.

Originally Posted by Granacki (Post 146427)

Greetings all
I tried posting this under New member introductions and no one else with this condition responded so I'm posting it again here. I'm new and still a little murky on how to post things.

I've been diagnosed with anti MAG neuropathy, an auto-immune variant with no known effective treatments. I never hear anyone else claim to have this seemingly uncommon type and very little is written specifically about it in the usual books. (Latov, Sennett, etc.). Luckily it is described as "very little progression over many years." Does anyone out there have any experience with this and is able to tell me what "little progression" has meant for them over many years? I've had it almost three years now (diagnosis just a few months ago at age 59) and so far, it's disturbing but bearable. I have burning, tingling and numbness in my feet but no weakness yet, no balance problems, and no shooting type pains. I've cut down on walking and standing but can bike as well as ever and can still walk 9 holes by taking it easy and recovering the next day. I read about so many other really disabling types of neuropathy that I wonder if that's in my future too. Any other anti-MAG folks out there?

Originally Posted by jrip (Post 744163)

My husband has had this type neuropathy for many years. He's now 76. Luckily he has no pain, mostly numbness esp. in feet. Recently (the past year) developed balance problems and walks with a cane. We tried the Rituxan infusion that has helped some, but it benefitted him hardly at all.
He has no problem bicycling and it's good exercise.

Originally Posted by EDELSTEP (Post 758021)

My husband had this type of neuropathy dx at 65 has had symptoms for 3 years. Luckily he has no pain, numbness in feet. Recently developed balance problems because of weakness in R foot. We are trying to get the Rituxan infusions but insurance does not want to cover our doctors are trying to write letters of medical necessity to the insurance company. Still waiting.
How did you get your approval for your infusions?

Originally Posted by Connan (Post 762857)

Nancy







It has been 10 weeks since the last of 4 Rituximab treatments.

I can now feel cold tile with my feet. I can also feel the depth of the pile when walking on carpet. My balance has improved significantly. I am no longer walking like a duck after falling asleep in the recliner. I can't believe it. I am still wearing "boots" except the feeling is just above the ankles and not mid thigh like it was 4 months ago. I hope these are all physical changes and not my brain making it up.
:D
Bob

Originally Posted by Granacki (Post 146427)

Greetings all
I tried posting this under New member introductions and no one else with this condition responded so I'm posting it again here. I'm new and still a little murky on how to post things.

I've been diagnosed with anti MAG neuropathy, an auto-immune variant with no known effective treatments. I never hear anyone else claim to have this seemingly uncommon type and very little is written specifically about it in the usual books. (Latov, Sennett, etc.). Luckily it is described as "very little progression over many years." Does anyone out there have any experience with this and is able to tell me what "little progression" has meant for them over many years? I've had it almost three years now (diagnosis just a few months ago at age 59) and so far, it's disturbing but bearable. I have burning, tingling and numbness in my feet but no weakness yet, no balance problems, and no shooting type pains. I've cut down on walking and standing but can bike as well as ever and can still walk 9 holes by taking it easy and recovering the next day. I read about so many other really disabling types of neuropathy that I wonder if that's in my future too. Any other anti-MAG folks out there?

Originally Posted by java_joe (Post 785409)

All - here's my case - any thoughts or words of wisdom are greatly appreciated.

I'm 51 years old and expecting a diagnosis of IgM Anti MAG neuropathy from my neurologist at my next appointment 15 days from now. I'm doing as much homework as possible to prep for that appointment.

I have symmetrical sensory loss in my skin, burning feet (everyday but not 24/7) and some very minor less than burning in my arms and hands (off and on) and I have imperceptible motor involvement thus far. The initial symptoms began in early March and have progressed. I have a MAG antibody (IgM) titer of 1:3,200 - the test guideline for interpreting the results were: < 1:1,600 normal, < 1:3,200 moderately elevated and < 1: 6,400 highly elevated. Immunofixation (serum & urine) have a "normal pattern" and no monoclonal proteins detected i.e., not indicative of plasma related cancer. But no bone or nerve biopsy. I am scheduled for an MRI of my lower back next week (not sure what the possibilities are there, no real back pain - any thoughts?).

I've read about a few folks who have had IgM Anti MAG neuropathy for many years and seem to manage the diminished quality of life. The literature seems to indicate slow progression but there is a dearth of information about long term outcomes - 10 or 15 years and beyond.

While my condition is manageable if degeneration continues at the same rate it's hard to image an outcome 10 years from now. I can't find cases of successful treatment for this type of autoimmune disease. Surely someone has experienced remission as a result of treatment. Anyone? Apparently IgM Anti MAG neuropathy is rare enough not to attract much research funding or specialization. Who are the heavy hitter doctors/clinics for this disease?

Rituximab is the drug that's appears to be the "next new thing" for this disease but that was purely serendipitous as it was developed to treat other diseases. And health care insurance companies are apparently not real excited about paying the steep cost for what I believe is still considered an experimental use for IgM Anti MAG neuropathy. But early intervention is almost always better - if I wait for more serious degeneration to set in I'm likely to have fewer viable nerves to heal.

So, as is probably apparent, my homework has been a bit depressing. I continue to scour the Internet looking up medical terms, testing assay methodologies, biological process and how the immune system goes about destroying nerve sheaths but I've learned little that offers promise thus far. Treatment studies (usually very small number of participants) and anecdotal case studies, a few trials but overall the body of literature is comparatively thin.

So that's my story - my journey has just begun

Originally Posted by Zaphodbeeblebrox (Post 834874)

Hello All ,
i am new to this forum , having only been diagnosed with Anti mag neuropathy a few weeks ago. i am a 62 yr old male, who over the past ten years having been previously diagnosed with Reynodes syndrome, (not sure if that was a correct diagnosis or if it was a precursor to antimag ).
i am currently able to walk (although i do have a noticeable defect in my gait).
i am told i have strong muscles in my legs (probably from daily walking).
i do have some balance problems (due to numbness in my feet) and an inability to walk unassisted in total darkness or with eyes closed without wall or furniture walking) .
my question to this forum is this: is this acquired immune disease common or uncommon? and has there ever been a known cause for this disease, and how far back (historically)has this disease be recorded?
and what is the prognosis for life with this illness?
my thanks to all who read and respond...

Originally Posted by NancyKay (Post 835002)

Hello Zaphodbeeblebrox,
I have had anti-MAG peripheral neuropathy for at least 10 years (having been diagnosed at the age of 46). Still walking, but definitely have balance issues so I go slow and hold on to railing, etc., and am especially careful if it is dark. I have tremors in my hands, so writing & keyboarding is difficult. Significantly less energy, leg cramps are sometimes quite bothersome, bad restless legs syndrome too. I started out getting IVIG infusions, which seemed to help for a while. Just finished a round of (series of 4) Rituxan infusions (finally approved by my health insurance) and am awaiting results and hoping for the best.

There is a lot of information on the internet about anti-MAG, some which can be pretty technical, but I would suggest that you start there. It will give you a better understanding of this autoimmune disorder. Briefly - this condition is rare - mostly seen at larger research medical facilities. No known cause, which is the case with most autoimmune conditions. It was first discussed in the medical literature at least 30 years ago. Prognosis - very slowly progressive for most people. Not an exact answer, but it varies. I have had it for at least 10 years, and most people don't know that I am not functioning at 100% - unless they see me bump into things or fall, which I do if I'm not careful, go too fast, or get distracted. There are certainly worse autoimmune conditions, in my opinion, but there is no cure for this currently, and progressive disability usually does come to us over time - 15-20 years or more? Google "anti-MAG neuropathy" and dig in...

Best wishes to you and keep checking for updates on new treatments, etc.

NancyKay