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 michaeljay (Post 150260)

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

Originally Posted by LisaMac (Post 790055)

Hi -
Just another comment... Rituximab does show improvement for PN - I've experienced it, however it's tough to get it funded if not for a cancer treatment (which was my case - in Canada, anyway). I am on a 'maintenance schedule' now, recieving a dose every three months for two years. My neurologist feels I should be 95% recovered by then. Mynumbness is still unchanged but my motor skills and reflexes are much better.
Hope this helps!
Lisa

Originally Posted by CarolH (Post 861979)

Granacki, this post is to you and any others out there with AntiMAG IgM.

In 2007, Granack posted a question seeking out others with AntiMAG neuropathy, but did not mention whether it was IgM, IgG or other related. Now, it is 2012. From you and from any other's with AntiMAG IgM, I am wondering how you are doing, how your symptoms have or have not progressed, and what treatments you have had.

My husband's symptoms began in 2001 at age 68. In 2005 was diagnosed with CIDP variant - AntiMAG IgM polyneuropathy and 2 years later with a benign form of NHL or paraproteinemia / Waldenstrom's (exact diagnosis was never completely clear but bone biopsy allowed him to get Rituxan) He had 2 years of steady IVIG treatment followed by 2 full rounds of single dose (not double) Rituxan. Neither helped much.

His disability remained fairly steady from 2007 to 2011 - difficulty walking, fatigue, numbness (toes to knees & hands), ataxia, no pain, proprioceptor nerve damage, sensory nerve damage, and likely later axional damage. He has required use of a powerchair most of the time but can manage walking short distances with a rollator. Cognitive functions are intact.

Now, however, he seems to be developing neurogenic bladder retention problems. We fear it might be related to his neurological problems. Our University of Washington neurologist predicted possible (in a certain % of patients) problems with the diaphragm but not bladder/bowel issues.

Now soon to be 79, we would like to compile information that has never been available to us about long term impact of AntiMAG IgM. We hope that it will serve as a guide to others with this disease, helping them plan their lives and activities more effectively.

To this end, we appreciate updates here from all AntiMAG IgM people regarding their ages, gender, symptom onset and progression, treatments and contact with other AntiMAG IgM people who might want to add their information here.

As much as we appreciate support and contact from people affected with other forms of CIDP, etc., we would prefer to reserve this post to people specifically diagnosed with, or who wonder about having AntiMAG IgM.

Thanks to you all!

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 MAGLADY (Post 997382)

You and I share the same diagnosis date 2009.. (took me a long time, years..to go to a Dr.) and the same MAG test results 102,400..REALLY high.. and sounds like same symptoms..wondering what your IGM serum test shows? mine is now 439 I am 65 and DO NOT LIKE EXPERIMENTING WITH DRUGS...so..no treatment..muscles in legs atrophing and lying down is miserable to sit or sleep..walking more than 1-2 mi. leaves me not being able to walk for the next few days..loosing weight..(muscle) mine was never about feet and hands..always arms and legs AND feet and hands..wonder if this is because of the high MAG..

Originally Posted by Kitt (Post 997393)

What was your diagnosis? Just curious. Thank you.

Originally Posted by dirotu (Post 864205)

Hi Lisa -Your story is similar to mine. I was diagnosed in March of 2009 with WM. Had 8 rounds with Rituxan. No help. I am now dealing with severe PN that is moving up my legs into the back of my thighs. My onco/hema says there is no way it is related to my IgM issue as the levels are too low (537 at this time). What I research says differently. I have an appointment with my family doctor in 2 weeks to discuss what step to take next. My Oncologist says I need to go to a university hospital to have this PN looked at to see what is causing it. I too am 48 and a female.
I am thinking a second opinion is needed as far as IgM issue. I may go to the University of Washington in Seattle for a workup. It all gets so confusing when you are outside the box with diseases.
Just wanted to let you know there is someone else in your similar situation. Diane

Originally Posted by CarolH (Post 861979)

Granacki, this post is to you and any others out there with AntiMAG IgM.

In 2007, Granack posted a question seeking out others with AntiMAG neuropathy, but did not mention whether it was IgM, IgG or other related. Now, it is 2012. From you and from any other's with AntiMAG IgM, I am wondering how you are doing, how your symptoms have or have not progressed, and what treatments you have had.

My husband's symptoms began in 2001 at age 68. In 2005 was diagnosed with CIDP variant - AntiMAG IgM polyneuropathy and 2 years later with a benign form of NHL or paraproteinemia / Waldenstrom's (exact diagnosis was never completely clear but bone biopsy allowed him to get Rituxan) He had 2 years of steady IVIG treatment followed by 2 full rounds of single dose (not double) Rituxan. Neither helped much.

His disability remained fairly steady from 2007 to 2011 - difficulty walking, fatigue, numbness (toes to knees & hands), ataxia, no pain, proprioceptor nerve damage, sensory nerve damage, and likely later axional damage. He has required use of a powerchair most of the time but can manage walking short distances with a rollator. Cognitive functions are intact.

Now, however, he seems to be developing neurogenic bladder retention problems. We fear it might be related to his neurological problems. Our University of Washington neurologist predicted possible (in a certain % of patients) problems with the diaphragm but not bladder/bowel issues.

Now soon to be 79, we would like to compile information that has never been available to us about long term impact of AntiMAG IgM. We hope that it will serve as a guide to others with this disease, helping them plan their lives and activities more effectively.

To this end, we appreciate updates here from all AntiMAG IgM people regarding their ages, gender, symptom onset and progression, treatments and contact with other AntiMAG IgM people who might want to add their information here.

As much as we appreciate support and contact from people affected with other forms of CIDP, etc., we would prefer to reserve this post to people specifically diagnosed with, or who wonder about having AntiMAG IgM.

Thanks to you all!

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 RoyC (Post 1004604)

Hi Everyone
I started having symptoms two years ago with the usual pins and needles in my feet. My gp put me on b12 and folic acid but the symptoms gradually worsened. He then sent me for a bone marrow bio and referred me to a neuro in Nanaimo who did some sort of nerve conduction testing which Im sure you all are familiar with. The neuro then had me to one course of ivig (4days) but there was no improvement so he then decided on a spinal tap. It was after this that he dx me with anti-mag. Admittedly not very knowledgeable with this variant he sent to Vancouver to see someone more familiar with it.
After her evaluation she told me what I needed was Rituxamab but unfortunately funding was difficult to get. To shorten the story, six months later after seeing two other hematologist I have been startedand feel very fat on 50mg prednisole plus I'm going for another course of ivig along with starting six months of cyclophosphamide (100 mg) daily.
At the present time the numbness has crept up to just below my knees,
the soles of my feet burn after walking for five minutes, I have lost more than20 lbs of fat and muscle tissue and hands just recently started to tingle.
I can't do more than ten minutes of yard work because of weakness in my lower legs and I feel extremely fatigued.
My gp told me after my dx that the progression would be slow (years) but I feel my progression seems somewhat faster than most. I would appreciated any comment and would be interested in knowing how others are managing.

Cheers!

Originally Posted by RoyC (Post 1010332)

Awful quiet out in here, just going to generate more recruits to this forum. Is there really that few of us around?

Originally Posted by RoyC (Post 1004604)

Hi Everyone
I started having symptoms two years ago with the usual pins and needles in my feet. My gp put me on b12 and folic acid but the symptoms gradually worsened. He then sent me for a bone marrow bio and referred me to a neuro in Nanaimo who did some sort of nerve conduction testing which Im sure you all are familiar with. The neuro then had me to one course of ivig (4days) but there was no improvement so he then decided on a spinal tap. It was after this that he dx me with anti-mag. Admittedly not very knowledgeable with this variant he sent to Vancouver to see someone more familiar with it.
After her evaluation she told me what I needed was Rituxamab but unfortunately funding was difficult to get. To shorten the story, six months later after seeing two other hematologist I have been startedand feel very fat on 50mg prednisole plus I'm going for another course of ivig along with starting six months of cyclophosphamide (100 mg) daily.
At the present time the numbness has crept up to just below my knees,
the soles of my feet burn after walking for five minutes, I have lost more than20 lbs of fat and muscle tissue and hands just recently started to tingle.
I can't do more than ten minutes of yard work because of weakness in my lower legs and I feel extremely fatigued.
My gp told me after my dx that the progression would be slow (years) but I feel my progression seems somewhat faster than most. I would appreciated any comment and would be interested in knowing how others are managing.

Cheers!

Originally Posted by RoyC (Post 1010332)

Awful quiet out in here, just going to generate more recruits to this forum. Is there really that few of us around?

Originally Posted by lmba214 (Post 1013592)

This is the only place I have found with people with anti-mag, so I'm thankful for it. I hope more people find it and add to it, too!

I posted to this thread over a year ago when I got a 'high titer" anti-mag lab result. Skin biopsy and NCV were normal. Previous ANA was very high, previuos SSA was pos. My Quality of life continues to decline, but mostly due to pain and fatigue. Still walk ok with bouts of dizziness, still trying to work 30 hours weeks but its getting harder. I do have some symptoms listed here, cramping in feet and legs and of course, some kind of neuropathy in feet and legs although it waxes and wanes.

I haven't seen much mention of pain and overwhelming fatigue associated with Anti-MaG neuropathy, CNS or sympathetic nervous symptoms.

Also wonder if any of your symptoms ever improve and then flare up again?


So.....
I'm wondering if anyone else also experiences dysautonomia, insomnia with parasomnias, headaches, shooting pains in arms, hands, legs, head? Blood or metabolic probs.?

I have also developed weakness and pain in my hips and this weird thing happens with my hands every so often, not daily. They seems to momentarily kind of just lock up when I'm using them. May be a kind cramping. Hard to describe.

I haven't returned to the neurologist that ordered the mag test partly because the office is horribly mismanaged. Takes 3-4 hours for appts. He said he would refer me to Vanderbilt. Just not sure if i should go to the trouble. Afraid they wont do anything for me anyway since I still pass most of the basic neuro exams. Anyone been there?

I would reAlly appreciate advice. I get anxious about this sometimes but don't know if I should act now and see if i can get treated or wait to see if I get worse. I've seen 2 other neurologists for herniated discs, a hematologist (high iron), my PCP and none even knew what ant-MAG was.

Getting an epidural for pain from spinal arthritis and the discs soon. Maybe after that I'll sacrifice my day off to get another MAG test done :-). Do most get it redone and if so how often?

Thanks!! Hope to hear how others are doing.

Originally Posted by NancyKay (Post 1051719)

I would encourage you to follow-up with a neurologist at Vanderbilt or another large research hospital as most neurologists have no experience or knowledge about anti-MAG neuropathy. Hope all goes well. You may have something other than anti-Mag neuropathy or a combination of conditions.

Originally Posted by Mel2014 (Post 1078355)

Hi NancyKay and Everyone on this thread,
My names Mel, I am a 54yr British woman living in The Netherlands and I was diagnosed with Anti-MAG in April 2014. I found this thread when I was first told they suspected I had Anti-MAG and I read all the posts. There is so little information and almost no help/support that I am also very happy to have found this thread.

I started getting a vibrating sensation in my left leg nearly two years ago and before that I'd had other symptoms that I had no idea were related, like very bad itchy legs and cramps in my left foot. I went to the doctor who sent me to hospital for nerve and vein tests in January 2013 but they found nothing and sent me away.

In August 2014 I had Bi Lateral Pulmonary Embolisms and was in hospital for a week. When they were looking for a cause they found MGUS IgM in my blood and then later the Anti-MAG. There is very little they can do and the only drugs/treatments are not proven to be very effective and have bad side effects.

My symptoms have become worse and I have vibrating sensations in both legs now and my hands have sensations, tremors and weakness.

I'm very scared although I do my best not to think about it too much and try to stay positive. I'm not working and I spend most of my time teaching myself to paint which was something I was doing before I was diagnosed. I also am trying out techniques to make it easier for me to be able to continue to paint as my condition gets worse.

Anyway, that's me saying hello and filling you in with a simplified version of my story. Anyone else have hobbies? Anyone know of any new studies into Anti-MAG PN?
Cheers Mel

Originally Posted by Mel2014 (Post 1078355)

Hi NancyKay and Everyone on this thread,
My names Mel, I am a 54yr British woman living in The Netherlands and I was diagnosed with Anti-MAG in April 2014. I found this thread when I was first told they suspected I had Anti-MAG and I read all the posts. There is so little information and almost no help/support that I am also very happy to have found this thread.

I started getting a vibrating sensation in my left leg nearly two years ago and before that I'd had other symptoms that I had no idea were related, like very bad itchy legs and cramps in my left foot. I went to the doctor who sent me to hospital for nerve and vein tests in January 2013 but they found nothing and sent me away.

In August 2014 I had Bi Lateral Pulmonary Embolisms and was in hospital for a week. When they were looking for a cause they found MGUS IgM in my blood and then later the Anti-MAG. There is very little they can do and the only drugs/treatments are not proven to be very effective and have bad side effects.

My symptoms have become worse and I have vibrating sensations in both legs now and my hands have sensations, tremors and weakness.

I'm very scared although I do my best not to think about it too much and try to stay positive. I'm not working and I spend most of my time teaching myself to paint which was something I was doing before I was diagnosed. I also am trying out techniques to make it easier for me to be able to continue to paint as my condition gets worse.

Anyway, that's me saying hello and filling you in with a simplified version of my story. Anyone else have hobbies? Anyone know of any new studies into Anti-MAG PN?
Cheers Mel