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!