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Anyone with Anti-MAG neuropathy?

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Unread 07-10-2011, 08:26 PM   #71
java_joe
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Default Newbie - IgM Anti MAG neuropathy

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
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Unread 07-26-2011, 12:43 AM   #72
LisaMac
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Default AntiMag Neuropathy & Waldenstrom Macroglobulemia

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
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Unread 07-26-2011, 10:37 PM   #73
LisaMac
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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
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Unread 07-28-2011, 06:39 PM   #74
Jelly Bean
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Quote:
Originally Posted by Granacki View Post
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?
Could be what I've had for 10 years, progressing the past 2 years. I'm 64 and it struck me when I was 55. Up until 2 years ago, I had tingling and numbness but no pain, no balance problems but my legs became easily fatigued. That became worse, now balance issues and muscle weakness. I've had no real diagnosis, had MRIs, EMGs, diagnosed with mild neuropathy but can't find cause or identify it exactly. I live in a small town and so should go to the City to specialist for right diagnosis. But I've done well after getting on plant base diet, reducing my sugar intake (even tho not diabetic), reducing alcohol to occasional glass of wine. And, I take the supplements that Mrs. D. recommends and exercise constantly. Just added a new supplement, Tumeric (in curry). I've seen a difference. Keep up the exercise that you're doing but watch very closely what you put in your mouth.
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Unread 08-23-2011, 06:41 PM   #75
Jelly Bean
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Smile

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.
Quote:
Originally Posted by java_joe View Post
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
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Zaphodbeeblebrox (12-23-2011)
Unread 11-14-2011, 05:44 PM   #76
Tim Hess
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Default

Hi,

I'm Tim and have been diagnosed with MAG Positive Neuropathy. I'm somewhat confused with all the jargon at times so bare with me. According to a recent blood test (MAG-SGPG Ab (IgM), EIA) my level of Antibodies to Ganglioside GM1 is 1:102400. The norm as I understand it should be in the area of 1:800. I was first diagnosed in 2009. Presently, the progression had been very rapid and it has now spread into both feet and legs, with weakness of strength in both hands and balance problems. My Neurology Specialist is suggesting a Rituxan IV infusion treatment. This I'm not totally aware of what affects this will do for my problem. I have been given the information that this treatrment is to offset my immune system from attacking my nerves and muscels due to the extremely high elevated antibodies. I would like to hear more on the use of Rituxan or other medications for this problem.
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Unread 11-18-2011, 03:27 PM   #77
NancyKay
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Join Date: Feb 2008
Location: Lummi Island, WA
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Default Anti-MAG neuropathy & Rituxan

I've been diagnosed with Anti-MAG neuropathy for about 10 years now. It has been slowly progressing with increased numbness in feet & lower legs, balance problems, decreased coordination in my hands, severe Restless Legs Syndrome, muscle cramps in my feet & legs, and decreased stamina. I am still working part-time doing office work (getting hard to keyboard and write), and some volunteer Parish Nursing.

I was first diagnosed at the age of 46, and I'm female, so I am also an oddity. IVIG helped for about 5 years, but then was not very effective, so I stopped getting the infusions.

I found a wonderful neurologist in Seattle at Virginia Mason Medical Center (VM) and just had my first Rituxan infusion yesterday. I was surprised that my insurance covered it - finally. I will be getting 3 more infusions a week apart. The infusion was done at the Outpatient Infusion Center at VM and all went well. When I got home I had some fever/chills, and this morning I felt weak, but am feeling better now (several hours later). I am hoping that Rituxan will be beneficial.

My advice to anyone living apart from a large city with a teaching/research hospital is - you must go to a neurologist who has seen & treated this rather rare condition in order to be properly diagnosed and treated.

I'm very thankful that it is SLOWLY progressive!

Blessings to all of you,
NancyKay
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Zaphodbeeblebrox (12-23-2011)
Unread 12-23-2011, 08:56 AM   #78
Zaphodbeeblebrox
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Location: Canada
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Help Anti MAG Neuropathy

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...
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Unread 12-23-2011, 06:34 PM   #79
NancyKay
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Location: Lummi Island, WA
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Default

Quote:
Originally Posted by Zaphodbeeblebrox View Post
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...
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
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Zaphodbeeblebrox (12-24-2011)
Unread 12-25-2011, 12:49 PM   #80
Zaphodbeeblebrox
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Location: Canada
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Default Anti MAG Neuropathy

Quote:
Originally Posted by NancyKay View Post
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



Hi NancyKay,

thank you for the excellent advice,,, i have already been researching much on the web about this disease ... but the technical jargon is confusing..
from what i understand Rituxin is only available in the USA... and since i am Canadian it is not available to me even on compassionate requests..
has anyone tried Electro magnetic Therapy? if so what kind of results ?
i am a level one Reiki practitioner and i perform Reiki on myself each day...
i have mixed results... and not even certain if it helps or not. but i seem to be somewhat better on my feet for a few hours after each session but by afternoon i am back at square 1...
i would like to get as many people together on line to discuss personal health histories to see if there are any similarities that might be poignant and possibly lead to treatments or at least warnings to those who might be candidates for this disease...
would anyone be interested in this?

Z
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