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

Hi

I am new to this site - it's comforting to hear others dealing with this disease.

I was diagnosed last January (2010) with Waldenstrom Macroglobulemia, presenting with AntiMag Neuropathy.

Initially it was thought I had MUGU, but a bone biopsy determined the lymphoma. The IgM proteins weren't high enough to warrant an aggressive approach for the WM, but the neuropathy was so bad that they figured if I didn't get treatment and knock back the IgM, then I would be in a wheelchair in a year or two. I am a 48 year old female....go figure, this usually affects men over 65.

I went through 6 cycles of chemotherapy (Cyclophosaphmide, Prednesone, Rituximub), once I completed that (over a period of 6 months), I started maintenance Ritux every 3 months for 2 years. I have completed my first year.

My neurologist said I was lucky to be diagnosed with the lymphoma as that was the only way the Ritux treatment would be funded. She is thrilled with my improvement on the Ritux - I am happy that my walking, balance, reflexes, and muscle tone is improving, but it is a slow process. My numbness still exists. My energy is still low, but I think it has improved a bit - maybe. I am concerned about what happens when I stop the Ritux. I have been told that it is hard on the system to stay on it longer than two years -so they will monitor my blood levels over the next few years and hit me again with the full blown chemo when the IgM's get high or my neuropathy gets worse.

As with everyone on this site, I am frustrated that there isn't more information for us diagnosed with this disease. Statistics show that only 1500 are diagnosed with WM/year in US and 200/year in Canada. Of those, only a small percentage presents with Peripheral Neuropathy. I live in Canada and although I am receiving great care, I have booked a consultation (for Sept 2011) with the Dana-Farber in Boston as they see the largest volume of patients with WM.

My biggest problem is the neuropathy & in particular leg cramps. My neurologist said cramps are a common AntiMag symptom. It's frustrating to exercise to maintain fitness and muscle tone, but when I do it (particularly pilates or any toning exercises when the toes are pointed) I cramp up so bad I can't complete the fitness class. Has anyone had this problem? Any solutions? I am taking supplements (Calcium, Magnesium, Potassium) and drinking lots of water, but it doesn't seem to make a difference.

Sorry for the rambling saga - hopefully there is someone else out there who can relate.

Look forward to reading other's posts as they try new things....

Lisa

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

Hi Diane,
I was diagnosed with anti-MAG neuropathy when I was around 46 years old (now 58) and have tried IVIG & rituxan without much benefit. I am currently seeing a neurologist at Virginia Mason in Seattle (Dr. Michael Elliott). I have found that with unusual conditions, it is always best to go to a larger university/teaching hospital where physicians have seen the rarer diseases and can diagnose and treat them better. I am currently working as a hospice nurse, but have problems with writing/keyboarding (tremor) and balance, so I do struggle with working. I wish you the best as you seek a suitable neurologist and treatment.
NancyKay

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

Hi LisaMac
i was led to believe Rituximab was not available in Canada.. where (if you don't mind my asking ) in Canada are you...i am in Southern Ontario and see a neurologist at MacMaster University Hospital..i would definitely like to keep in touch with you to follow your treatments.

Look into the treatment Dr. Thomas Rau gives at his Swiss center and his book "the Swiss Secret" that tells how to implement it at home. That's where my journey has taken me in 10 years. Good luck.

Hi Java Joe,
I have anti-MAG IgM peripheral neuropathy and was very excited when I was approved by my insurance co. to receive the Rituxan treatments in 2011. I had the 4 weekly infusions, and was disappointed that I was one of the unfortunate ones that did not respond to the treatment with any noticeable benefit. It did kill off the B lymphocytes, but did not improve my symptoms at all. Still looking for a good treatment.
NancyKay

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!

Hi Roy,
Thanks for your post. There are a number of us out here in the Pacific Northwest (USA & CA) with anti-MAG neuropathy. Our experiences of this disease are so similar (burning feet, balance problems, loss of sensation, tremor, weakness, fatigue, leg/foot cramping) and yet how the disease progresses seems to differ in some of us. Sorry to hear that yours is progressing so quickly. I am interested in your treatment with prednisone. I hope the benefit is greater than the side effects for you. Let us know how you are doing.
NancyKay