Anyone with Anti-MAG neuropathy?
 

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?

welcome
 

I'm still on my way to be diagnosed - I suffer from some kind of neuropathy - for meanwhile - idiopatic.
Can you please tell more - how it started? what tests you have done to be diagnosed? and what ever will help us/me to understand more and learn more...

Welcome
 

Hi,
This is the place to be if you have neuropathy. The combined knowledge of this group is tremendous. I don't remember any of the members with Anti-Mag neuropathy. Can you tell us a little about what it involves. Maybe the definition of Anti-Mag..some of us do have autoimmune neuropathies.

Welcome to the group.
Billye

Anti-Mag
 

--refers to antibodies to myelin associated glycoprotein (that's where the acronym comes from), which is one of the basic building blocks of the myelin sheath in both the central the peripheral systems. If one has antibodies, one tends to have a demyelinating neuropathy that has both sensory and motor manifestations, and these can be quite debilitating, as the antibody titer tends to get in the way of the nerves' attempts to remyelinate.

Many people with such a neuropathy also have antibodies to SGPG--sulfated glucuronyl paragloboside, and--here's an area of greater concern--serum M-proteins (monoclonal antibodies) of the IgM class. These are often associated not only with neuropathies in their own right, but with certain blood cancers, and a thorough hematological work-up is recommended.

See:

http://www.neuro.wustl.edu/neuromusc...imdem.html#mag

There are some moderatly effective treatments, but these usually involve the heavy immune suppresants that often are used for blood cancers, such as Rituxan and Cyclophosphamide. Plasma exchange may also prove useful to lower antibody titers.

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?

anti-mag
 

I have the same problem and went thru a simlar long program trying to identify. they start with the worst..

three years now and progressing slowly/ I did the rituxan therapy with little effect. not sure how bad this will get. I spend 1 1/2 days in the gym/ at this point all sensory no motor but I can barely type and balance is bad

be interested to share notes

Hi Michaeljay! Welcome to our wonderful forum!
Sorry to hear you have Anti-mag but you have come to the right place to learn about it and meet others with PN!

anti-mag
 

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

I was diagnosed with anti-MAG neuropathy in 2002. I was successfully treated with IVIG until 2007. It didn't seem to bring any improvement, so I quit getting the treatments. I am doing OK, as long as I don't get hot or walk or stand too long. I am now living in the Pacific Northwest where it is cool and I am only working part time. I have some balance problems and some coordination problems, but otherwise function pretty well.

How are you doing?

Anti-MAG polyneuropathy sufferer
 

Hey out there, you are not alone. I am very open to share story.
Steve Short

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

Anti Mag
 

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.

Mag Neuropathy
 

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

anti-mag for 3 years
 

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.

Mag neuropathy
 

I wonder if you are still on this site..funny I have MAG too and have actually stayed on Lummi island.

Write back if your out there.

Maglady

Hi Maglady,

How amazing that you have anti-MAG neuropathy and stayed on Lummi Island! I am 54 and have been diagnosed for about 8 years. I've gone down to Virginia Mason Hosp. to see a neurologist there. I'm not currently receiving any treatments, but would like to try Rituxan. Let me know what you are receiving in the way of treatment and where you are going to get it.

NancyKay

Hey Steve - how and when were you diagnosed with anti-MAG?

NancyKay

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. I am an antimag person too, but have only this year been treated for it.
 

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.

Frightened and Newly (almost) diagnosed
 

Hi,
I'm new to all this stuff, bear with me :-).
I am 25 years old and just over the past few months have noticed some numbness and tingling that's gotten progressively worse. I saw a neurologist after my MD suggested the symptoms warrented a workup. The neurologist saw some clinical mostly sensory problems, and ordered a brain MRI which was wnl, bloodwork where all was normal except my anti MAG was elevated to 3386 (999 was cutoff for abnormal). I had my EMG/NCV which this week which showed motor nerves ok but my feet and hands all had sensory symmetric "low and slow" velocities. I am still waiting for an official "diagnosis", and next week am having a lumbar punture and MRI of spine/thorax. The neurologist seems surpised that the bloodwork was positive for anti-MAG, said he ordered it without expecting anything in that direction, the GM1 was negative. Since my initial "occasional numbness and tingling" I am now experiencing (For the past few days) Burning sensation that stays (as opposed to coming and going) and is from my kneecaps down on both legs. My palms also burn almost constantly. In the past few weeks I've gone downhill fast. I didn't realize there was a difference with CIDP and anti-MAG polyneuropathy. Are they closely related? How were others diagnosed?

Good morning. I am brand new to neurotalk. I have the anti-mag syndrome and am trying to work my way around this site to get and share into. Are you still posting? Will appreciate hearing from you. Nancy W.

Have antimag and treatment working
 

After 10 years of diagnosis of monoclonal gamopathy and noone suggesting any help, I went to another neurologist who did blood tests and diagnosed me with antimag. I have had 13 plasma pherisis treatments since April/09 and have seen positive results. Not huge overnight improvement, but slow and I am walking better. I want to mention that during the last several years I have exercised 3 times/week swimming laps and really working legs and feet hard and I believe that this has helped recovery; i.e., keeping the muscles in good shape.

Nice to know you're out there!
 

HERE!...
Well, I'm making my second trip to the hospital for my second in 4 months multi-day neuropathy drip, the admitting doctor indicated in our discussion my diagnosis of "anti MAG neuropathy" (to coincide with my mono clonal gammapthy. He Goggled the subject on my laptop - and I saw your post. One in the same issues Granacki - like listening to myself...same age (60), same almost everything. If this [2nd] 4-day treatment doesn't work...then there is a [dialysis] form of treatment which as described to me "replaces (someone elses) protein serum for the anti-MAG one I/we have." SO, one (painful) step at a time. It's all very frustrating, debilitating, and painful by the day. But I have resolved to keep walking (every other day as you for recovery minus my summer mowing), using my Bowflex every other day for strengthening, and hopefully we'll see results this [last] time around before we get into what my neurologist calls the "invasive" procedure I mentioned above. Also, had the scare where my N-Dr sent me to hemolotolgist/oncologist because of the mono clonal gammapathy of "unspecified origin," which could - or not - be associated with my neuropathy...and potential for or cause of bone/blood cancer(s). Negative, with Anyway, keep heart. Reply an/or email, we can either commiserate or see if we're both experiencing likewise issues and what one might be doing.
Good luck.

Hello, Dr. Buddie. Sounds like you and I share a diagnosis -- mine was 10 yrs ago as "monoclonal Gammopathy". The neurologist just gave it a name and sent me on my way -- guess they didn't have the science to treat it in those days. Recently went to OSHU and they did highly specialized blood tests, hence the "antimag" diagnosis and a process of plasma pheresis was recommended. Have had 13 treatments since April 2009 and am getting better - slowly. Yes, having the port installed and dealing with it over the months was scarey at first and certainly unhandy to live with. BUT VERY HANDLEABLE as compared to getting worse!!! The pheresis process took abut one hour each time. It takes all the plasma out and they discard it with all the bad proteins (and the good ones) and replace it.
The dialysis staff is hugely knowledgable and helpful and i always felt secure. As I have mentioned I AM GETTING BETTER - more sensation in feet and ankles -- I am more steady walking - haven't tripped in months. I've just had the port removed -- I may have a fistula in my arm installed if further treatment is indicated. dr. also talking about trying Rituxan in the future, as an alternative. I have a few months to see what happens. I am going to Europe in October and will celebrate my 70th Birthday on a rivership on the Rhine. Meantime, just wanted you to know that Plasmapherisis was a help to me. Good luck. Nancy W.

I'm another one with anti-MAG neuropathy - diagnosed 7 years ago. Was on IVIg initially with good results. After about 4 years, it didn't seem to be helping with the symptoms any longer. I have trouble walking for very long, especially in hot weather. My feet just burn and feel terrible. Thus, I don't walk as much as I used to. My balance is poor - I really need to think about what I'm doing or I loose my balance and fall. No more running around in a hurry. I just started seeing a new neurologist in Seattle (Virginia Mason Hospital) and need to decide what kind of treatment to start. I would like to try the Rituxan, but my insurance isn't keen on paying for it. I am 54 years old and worry about what my future holds. I had an uncle die of Waldenstrom's Macroglobulinemia - so I worry about that as well. Would love to have some dialogue with others who have anti-MAG neuropathy as I feel alone.

Hi Maglady,

It's great to hear from you! How are you doing? How long have you had anti-MAG neuropathy? It is a bit over 7 years for me. I am seeing a neurologist at Virginia Mason in Seattle. I'm not sure what treatment to try next. IVIg worked for a while, but I've been off treatment for almost 2 years and the numbness, burning, poor coordination & fatigue just keep slowly progressing. I need to get started on something that works. Hope to hear from you soon. Where did you stay on Lummi Island?
NancyKay

Hi Laura,
I was diagnosed with anti-MAG neuropathy 7 years ago. My symptoms started with numbness in my finger tips and toes and weakness in my legs (falls). I went to a neurologist who ran a lot of blood tests and EMG/NCS. It turned out that I had elevated IgM and anti-MAG auto-antibodies. The NCS showed slow nerve conduction. I wasn't diagnosed with anti-MAG peripheral neuropathy until I saw a neurologist at a large research facility who had taken care of other people with this condition. I was started on IVIg which helped for a number of years. The symptoms have progressed slowly over the years to burning in my feet and hands when they get warm, balance problems and coordination problems. I haven't had any treatments after the IVIg became ineffective (about 2 years ago). I was 46 when diagnosed. You are very young to have anti-MAG peripheral neuropathy. I hope you get a diagnosis soon and good treatments. In comparison to other autoimmune conditions - this one isn't so bad. Let me know what you find out and what treatment you get.
Blessings to you! NancyKay

Thanks so much for writing back, also. I am still waiting for the official diagnosis, results of the lumbar puncture and spine/neck MRI should be back today but my MD is off until Monday, so a weekend of waiting (and worry) is ahead. I am getting a second opinion as well, which is already scheduled, but I feel like the Dr. I am seeing just wants to treat symptoms at this point, he has admitted this is not something he has seen often and the progression has been very fast in the last few weeks. I am just waiting for the offical diagnosis. What other tests were run and led to your diagnosis? Mine started with just the weird sensations and falling asleep feelings but its rapidly gotten life disrupting. Does yours get a lot worse at night? Dropping things? Have you had much motor involvement or just sensory? Sorry for the barrage of questions, its a rare thing and nobody that I talk to has heard of this. I work in OB/GYN and even the MD's I work with are completely unaware of this. Thanks for your time, I will let you know what treatments and official diagnosis they hand me.
Hope you're doing well.
Laura

Hi Laura,
Mine was very slowly progressive. I was in my mid 40's when I was diagnosed. You are very young to have this diagnosis as it is usually the diagnosis of men in their 60's & 70's. I will be very interested in hearing what your official diagnosis is. I know that waiting is very difficult - hang in there! NancyKay

I too am like you...
 

Hey Laura, My name is Jon and I live in New Zealand. I read your story with interest and as you can see here you are not alone.
I, like you have been recently diagoned as CIDP anti-mag (in March 2009).
At first I was incorrectly diagnosed as just CIDP. I started on prendisone and azathioprene tablets, then had 25 intragam infusions, then went to fortnightly 1000mg methyl predisilone pulsed steriod infusions and I still struggled. In October 2009 a blood test surfaced 5 months after it was done showing my anti-mag levels were at 9,000 (in April). Another blood test was done immediatly and showed my anti-mag was now at a staggering 55,000.
I was immediatly funded and put onto 4 Rituximab infusions which finnished in November 09 when I also had some hyperbaric oxygen therapy. I had no problems with Rituximab what so ever. Some days I even went to the gym in the afternoon following my morning treatment! Its now February 2010 and Im awating the results from my Rituxmab chemo which is another blood test in mid February. I hope it has some effect.
How are you feeling and what progress are you making? Are you on facebook? Im easy to find under Jon Anda in New Zealand. I wish you well. Regards. Jon

Just diagnosed with anti-MAG neuropathy
 

I'm new to this site - don't quite know how to use it! I've just been diagnosed with anti-MAG neuropathy. Neurologist tells me it is quite rare, usually hereditory. My next step is to have a work-up with hematology, possibly a bone marrow biopsy. I have tingly and numbness in toes, seems to have progressed in the last two years to ball of foot. So far I'm able to function normally, walk my dog every day, go to gym 3/week. It is more of an annoyance than painful. Am anxious to get tests from hematology.

Not all anti-MAG--
 

--is hereditary; quite a lot is acquired, generally as a cross-effect of monoclonal gammopathy or other immune blood disorders, which is why they want the hematological work-up.

Take a look at the following from the Washington University at St. Louis neuromuscular website--it's written in doctorese shorthand, but very comprehensive:

http://neuromuscular.wustl.edu/antib...imdem.html#mag

http://neuromuscular.wustl.edu/antibody/mprotein.htm

Anti-Mag
 

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.

Mgus
 

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.....

Good morning. Seems like we have similar age (I'm 70) and experience with antimag neuropathy. I began to get symptoms of deadness in toes about 12 years ago, was diagnosed with perf. neuropathy and I wasn't offered any help or add'l info until early 2009. Over that time span my feet got pretty numb, and muscle problems began in ankles and legs (bad balance, hard to keep up with group on walks, etc.). In early 2009 I was diagnosed with the antimag thing at OSHU. They started me on a regimen of plasma Pheresis (removing all plasma from bloodstream and the antimag proteins with it) which I continued for 4 months.
It helped moderately with numbness in feet and weakness in legs. OSHU is now recommending treatment with Rituxamab -- I see the doctor today to find out about these treatments. I am wondering if medicare took care of payments for your rituximab treatments?? Or did you go ahead with it? I'll be happy to share my info/experience with this treatment and my condition with you and others.