Anti Myelin Associated Glycoprotein Antibodies

Posted by artistwagoodi @artistwagoodi, Mar 1 7:55pm

CIDP is a fairly rare disease. Anti Myelin Associated Glycoprotein(MAG) Antibodies falls under the CIDP label but is far rarer, especially in women.
I was diagnosed along with Axonal Polyneuropathy last fall. I had 4 doses of Rituximab(an unproven drug) in November/December. I am looking for others with Anti MAG Antibodies to start a conversation to discuss our experiences, as well as, the progression of this disease.
If you're out there, please reply.

Interested in more discussions like this? Go to the Neuropathy Support Group.

My 2 neurologists over 10 yrs have diagnosed CIAP for me: chronic idiopathic axonal polyneuropathy. I am a 78 yr old male and have no pain—problem is balance issues and decreasing distances that can walk, especially if inclines. Also, fatigue after limited exertion and sensitivity to hot/cold temperatures. Last year my newer neurologist referred me to a hematologist/oncologist based on some new expanded blood tests. He diagnosed me with lgM MGUS, which has been shown to progress to Waldenstrom's or other NHL over many years. It's all very complicated and difficult to understand, as he also has described this as Monoclonal Gammopathy of Neurological Significance and as Monoclonal Paraproteinemia. This is a type of MGUS, but not "unidentified" because he feels this may be a reason for my CIAP. He recommended Rituximab infusions, with possible 40-50% positive results.

I completed first 4 Rituximab infusions, 1 per week, early this year. Now scheduled for 4 more—every 2 mths March, May, July and Sep. Haven't seen any changes, but MD said if do get improvement, it could take some time to show up. Don't know if my diagnosis relates in any way to yours, but would love to stay in touch on this Rituximab infusion journey to compare results.
Thanks

REPLY

Thank you so much for responding!
The studies on Rituximab have been so small that it isn't even listed on cochrane.org, a very respected organization that follows trials for all illnesses, most likely because there's so few of us. It's a very rare disease. Out of all of the CIDP-like disorders, only 5% have Anti MAG Antibodies. Of that 5%, 90% are male and 10% are female. So basically there's no money in it for the drug company to our detriment.
I believe positivily in sharing our experiences. Maybe we can help each other 😊
I'd like to start a separate chat for people with Anti MAG Antibodies. My first post wasn't worded so well as to attract the attention I'd like to see. May a new post with a larger title?

I believe the Anti MAG Antibodies started 20 years ago in 2 toes.
However, my diagnosis came late last September.
Since then, there have been countless tests, blood work ups, X-rays, CT scans, biopsies, Hematologists, Oncologists, Neurologists, and more. They're also watching for lymphoma, a cancer that can be associated with this disease. I had my first 4 Rituximab infusions in November and December with a break for my first COVID-19 infection. I've seen no progress but, as you, the doctors have said it may take as many as 6-10 months to see a result. Meanwhile, I keep masked for my immuno-compromised body.

Since muscle and strength loss are a large part of the progression of this disease, I've decided to keep working on walking, strength training with barbells and aquatic exercise. I have been loving the aquatic exercise because, I feel so safe in the water. I can almost follow the young instructors step of step, something I can't do on land. I can balance on one foot for over 1/2 minute! However, I'm missing the boost of energy I've had in the past after exercising for a few weeks. This may be part of the disease. I'm not going to let it stop me, though.

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@artistwagoodi

Thank you so much for responding!
The studies on Rituximab have been so small that it isn't even listed on cochrane.org, a very respected organization that follows trials for all illnesses, most likely because there's so few of us. It's a very rare disease. Out of all of the CIDP-like disorders, only 5% have Anti MAG Antibodies. Of that 5%, 90% are male and 10% are female. So basically there's no money in it for the drug company to our detriment.
I believe positivily in sharing our experiences. Maybe we can help each other 😊
I'd like to start a separate chat for people with Anti MAG Antibodies. My first post wasn't worded so well as to attract the attention I'd like to see. May a new post with a larger title?

I believe the Anti MAG Antibodies started 20 years ago in 2 toes.
However, my diagnosis came late last September.
Since then, there have been countless tests, blood work ups, X-rays, CT scans, biopsies, Hematologists, Oncologists, Neurologists, and more. They're also watching for lymphoma, a cancer that can be associated with this disease. I had my first 4 Rituximab infusions in November and December with a break for my first COVID-19 infection. I've seen no progress but, as you, the doctors have said it may take as many as 6-10 months to see a result. Meanwhile, I keep masked for my immuno-compromised body.

Since muscle and strength loss are a large part of the progression of this disease, I've decided to keep working on walking, strength training with barbells and aquatic exercise. I have been loving the aquatic exercise because, I feel so safe in the water. I can almost follow the young instructors step of step, something I can't do on land. I can balance on one foot for over 1/2 minute! However, I'm missing the boost of energy I've had in the past after exercising for a few weeks. This may be part of the disease. I'm not going to let it stop me, though.

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Yes, I too have muscle and strength loss, with fatigue. And I also walk daily 20-30 minutes, lift weights 3x/wk, and do rehabilation balance exercises I learned the other 3 days. Have been taking Sundays as rest day. Have found that exercise bike in place of walking doesn't give me the leg/general fatigue that walking does—but rather do walking to be outside. Sounds like you have a good exercise plan and positive attitude/approach. Will keep you posted in future on whether I see results after my upcoming 4 bi-mthly Rituximab infusions.

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I have been dealing with health issues for 4 years now. Before March 2019, I was a life long athlete, marathons, triathlons and Ironman and within a few months, I could only walk short distances, difficulty with stairs, no balance, weak muscles, no reflexes and the list goes on. I was first diagnosed with Guillan Barre Syndrome followed with 50 IVIG treatments which ended up being the wrong diagnostic. Then 2 years ago I was diagnosed with IGM paraprotein neuropathy, later, Anti Mag Neuropathy and now DADS-M with Anti Mag with MGUS. How rare is that. Three different diagnosis with three different neurologists. I had 4 rounds of Rituximab within a month 2 years ago with no improvement. My Oncologist suggested I try Rituximab every 3 months for one years see what happen. After 3 treatments, still no change but they tell me to be patient as well. Three years of physical therapy helps me with my balance. I wish I could do more exercise but I can't do anything that involves my legs. I do rowing, handcycle, swimming and upper body weights. I feel there is more to it because now I have memory, cognitive and speech issues following a double lung embolism. I have more symptoms but the list is too long. I am 62 years old and feels like 80+.

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@savomic

I have been dealing with health issues for 4 years now. Before March 2019, I was a life long athlete, marathons, triathlons and Ironman and within a few months, I could only walk short distances, difficulty with stairs, no balance, weak muscles, no reflexes and the list goes on. I was first diagnosed with Guillan Barre Syndrome followed with 50 IVIG treatments which ended up being the wrong diagnostic. Then 2 years ago I was diagnosed with IGM paraprotein neuropathy, later, Anti Mag Neuropathy and now DADS-M with Anti Mag with MGUS. How rare is that. Three different diagnosis with three different neurologists. I had 4 rounds of Rituximab within a month 2 years ago with no improvement. My Oncologist suggested I try Rituximab every 3 months for one years see what happen. After 3 treatments, still no change but they tell me to be patient as well. Three years of physical therapy helps me with my balance. I wish I could do more exercise but I can't do anything that involves my legs. I do rowing, handcycle, swimming and upper body weights. I feel there is more to it because now I have memory, cognitive and speech issues following a double lung embolism. I have more symptoms but the list is too long. I am 62 years old and feels like 80+.

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So sorry for all your symptoms and loss of physical abilities. When one has been as physically active as you were and still relatively young, can certainly understand your frustration at having to adjust to the neuropathy now. Good luck on this journey and hope the Rituximab helps at some point. My oncologist/hematologist said that if my infusions don't show any improvements over time, perhaps they will at least help keep the neuropathy from getting worse than might otherwise. Probably know way of actually knowing though.

REPLY
@artistwagoodi

Thank you so much for responding!
The studies on Rituximab have been so small that it isn't even listed on cochrane.org, a very respected organization that follows trials for all illnesses, most likely because there's so few of us. It's a very rare disease. Out of all of the CIDP-like disorders, only 5% have Anti MAG Antibodies. Of that 5%, 90% are male and 10% are female. So basically there's no money in it for the drug company to our detriment.
I believe positivily in sharing our experiences. Maybe we can help each other 😊
I'd like to start a separate chat for people with Anti MAG Antibodies. My first post wasn't worded so well as to attract the attention I'd like to see. May a new post with a larger title?

I believe the Anti MAG Antibodies started 20 years ago in 2 toes.
However, my diagnosis came late last September.
Since then, there have been countless tests, blood work ups, X-rays, CT scans, biopsies, Hematologists, Oncologists, Neurologists, and more. They're also watching for lymphoma, a cancer that can be associated with this disease. I had my first 4 Rituximab infusions in November and December with a break for my first COVID-19 infection. I've seen no progress but, as you, the doctors have said it may take as many as 6-10 months to see a result. Meanwhile, I keep masked for my immuno-compromised body.

Since muscle and strength loss are a large part of the progression of this disease, I've decided to keep working on walking, strength training with barbells and aquatic exercise. I have been loving the aquatic exercise because, I feel so safe in the water. I can almost follow the young instructors step of step, something I can't do on land. I can balance on one foot for over 1/2 minute! However, I'm missing the boost of energy I've had in the past after exercising for a few weeks. This may be part of the disease. I'm not going to let it stop me, though.

Jump to this post

Hello! I’m 76 years old woman and I was just diagnosed with anti Mag. Originally it was just CIDP and my neurologist started me on IGIV. My original mag test was negative, but my blood was also sent to another lab ( more trustworthy university research lab) and it came back positive. Both tests done by the same technology (western blot), still wondering how it’s possible to have such opposite results. They continue with the IGIV treatment- just had the second treatment, once in 3 weeks. My symptoms started just 4 months ago… was healthy before, walked 4 miles a day etc. Such a rare-rare disease.. Out of nowhere…

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Would you be willing to share your symptoms? I have had peripheral neuropathy for 20 years with symptoms that flare and recede but have gotten worse over time, now with weakness in my legs and an unsteady gait. So far no known cause. I have an appointment with a neurologist in October, but I am struggling and desperate for answers. I empathize with your situation as a previously healthy person now blindsided by a disorder seemingly coming from nowhere. I'm wondering if some of these "rare" neurological disorders will become not so rare as the population is exposed to more and more environmental toxins or other things, but that is just my own personal theory.

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@sjg67

Would you be willing to share your symptoms? I have had peripheral neuropathy for 20 years with symptoms that flare and recede but have gotten worse over time, now with weakness in my legs and an unsteady gait. So far no known cause. I have an appointment with a neurologist in October, but I am struggling and desperate for answers. I empathize with your situation as a previously healthy person now blindsided by a disorder seemingly coming from nowhere. I'm wondering if some of these "rare" neurological disorders will become not so rare as the population is exposed to more and more environmental toxins or other things, but that is just my own personal theory.

Jump to this post

It started with tingling in my toes and now the entire sole numbness, my toes fill like a large metallic paper clip attached to them- don’t know how better to describe it. Weakness in my legs, have to use cane when out the door. Thank you for reaching out, hopefully you’ll have some constructive feed back from your doctor.

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MAG level of 1418 versus normal range of 0 to 999. Other MAG bloods were classified as a ratio, eg: 1:1500 and 1:1600. Don't know the difference in reporting. Have been told these are high but not significant as I do not currently have the M-Spike or MGUS. 8 EMGs suggest axonal poly neuropathy, not CIDP. Have high protein and low glucose in CSF but again, supposedly not significant. Also have elevated ACA IgM and positive TNFa but also not enough to cause any of my docs to do anything to try and help. Extremely frustrating.

For the past 3 years I've had weakness in lower legs and dizziness that comes on as soon as I open my eyes in the morning until I go to bed at night. The dizziness is probably worse than the weakness. Many tests and doctors. A couple docs suggested IVIG but one neuro thought it could damage my brain. I also have a blood cancer, too many platelets, but my version of it causes bleeding versus clotting. Also have lower lumbar foraminal stenosis playing a role in weakness. Hoping that will be resolved with surgery soon.

Evn with the blood cancer, I was very active also up until the neuropathy came on. Have considered it being caused by meds like interferon for my blood (which has been well controlled), COVID, flu shot, etc.

I believe I am doomed to be one of those people who die while all my docs sit by and wonder what is wrong despite all sorts of abnormal tests. Although in my case most of them probably wont even care. Most docs give you the standard 20 minutes of their time, write up their notes and claim they spent a whole hour or hour and a half like its some kind of massive gift. The its like see ya, and don't call with any questions.

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@george1976

MAG level of 1418 versus normal range of 0 to 999. Other MAG bloods were classified as a ratio, eg: 1:1500 and 1:1600. Don't know the difference in reporting. Have been told these are high but not significant as I do not currently have the M-Spike or MGUS. 8 EMGs suggest axonal poly neuropathy, not CIDP. Have high protein and low glucose in CSF but again, supposedly not significant. Also have elevated ACA IgM and positive TNFa but also not enough to cause any of my docs to do anything to try and help. Extremely frustrating.

For the past 3 years I've had weakness in lower legs and dizziness that comes on as soon as I open my eyes in the morning until I go to bed at night. The dizziness is probably worse than the weakness. Many tests and doctors. A couple docs suggested IVIG but one neuro thought it could damage my brain. I also have a blood cancer, too many platelets, but my version of it causes bleeding versus clotting. Also have lower lumbar foraminal stenosis playing a role in weakness. Hoping that will be resolved with surgery soon.

Evn with the blood cancer, I was very active also up until the neuropathy came on. Have considered it being caused by meds like interferon for my blood (which has been well controlled), COVID, flu shot, etc.

I believe I am doomed to be one of those people who die while all my docs sit by and wonder what is wrong despite all sorts of abnormal tests. Although in my case most of them probably wont even care. Most docs give you the standard 20 minutes of their time, write up their notes and claim they spent a whole hour or hour and a half like its some kind of massive gift. The its like see ya, and don't call with any questions.

Jump to this post

Welcome @george1976, It must be difficult to say the least trying to figure out the cause and what can provide some relief for your symptoms. I have read that interferon can cause dizziness, tiredness and a host of other symptoms. Have you discussed it with your doctor to see if they might have some suggestions for dealing with the dizziness and weakness?

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