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Old 08-29-2009, 10:42 PM #21
NancyKay NancyKay is offline
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Originally Posted by snshort View Post
Hey out there, you are not alone. I am very open to share story.
Steve Short
Hey Steve - how and when were you diagnosed with anti-MAG?

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Old 08-29-2009, 10:59 PM #22
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Originally Posted by Marilyn Henson View Post
Hello,
I am responding with the hope I may be of some help to your Anti MAG health issue.
I have been under treatment at the University of Washington Hospital for aproximately seven years now with success. I became afflicked with tingeling, pain and numbness in the heals of my feet, weekness in my legs, and extreme tiredness. I spent many a nights with out sleep in the beginning.
I see a specialist at the UW hospital. I am under ongoing treatment with Rituxin IV's every 10 weeks. This has halted and also improved my condition.
My DR. is Micheal Weiss.
Hi Marilyn,

I have seen a neurologist at Virginia Mason Hosp. and I'm trying to decide which way to go with treatments. I was diagnosed about 8 years ago at the U. of Iowa Hosp. in Iowa City. I received IVIg for several years with some success, but it seemed to become less helpful over time. I would like to start Rituxan but will need to convince my insurance co. that I need it. Dr. John Ravits is the neurologist I am seeing.

Hope to hear from you.

NancyKay (Lummi Island, WA)
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Old 09-03-2009, 12:04 PM #23
NANCY W. NANCY W. is offline
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Default Hello. I am an antimag person too, but have only this year been treated for it.

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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?

Hello. I am an antiMAG person too - diagnosed 10 yrs ago with monoclonoal gamopathy but was never offered any treatment until this year. Slowly it got harder to walk, balance got worse, etc until I insisted on seeing a new neurologist. Was referred to Oregon Science & Health U & Hospital. Good news - I've been on plasma pherisis for 4 months and have seen steady (if slow) improvement in my walking and steadiness. Have had total of 13 apherisis treatments given through a subclavian port, which is not a very handy thing to have (no showering, swimming, kyacking, etc) Neurologist at OSHU/Hospital now recommending treatment with Rituxan but is leaving the decision to me. I'm thinking I may stay with "the devil I know" and have a fistula installed in my arm for continued pheresis treatment. I will certainly be glad to hear from and any others with ANTI MAG experience.
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Old 09-03-2009, 09:00 PM #24
LauraGTimes LauraGTimes is offline
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Confused Frightened and Newly (almost) diagnosed

Hi,
I'm new to all this stuff, bear with me :-).
I am 25 years old and just over the past few months have noticed some numbness and tingling that's gotten progressively worse. I saw a neurologist after my MD suggested the symptoms warrented a workup. The neurologist saw some clinical mostly sensory problems, and ordered a brain MRI which was wnl, bloodwork where all was normal except my anti MAG was elevated to 3386 (999 was cutoff for abnormal). I had my EMG/NCV which this week which showed motor nerves ok but my feet and hands all had sensory symmetric "low and slow" velocities. I am still waiting for an official "diagnosis", and next week am having a lumbar punture and MRI of spine/thorax. The neurologist seems surpised that the bloodwork was positive for anti-MAG, said he ordered it without expecting anything in that direction, the GM1 was negative. Since my initial "occasional numbness and tingling" I am now experiencing (For the past few days) Burning sensation that stays (as opposed to coming and going) and is from my kneecaps down on both legs. My palms also burn almost constantly. In the past few weeks I've gone downhill fast. I didn't realize there was a difference with CIDP and anti-MAG polyneuropathy. Are they closely related? How were others diagnosed?
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Old 09-06-2009, 11:14 AM #25
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Originally Posted by Granacki View Post
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?
Good morning. I am brand new to neurotalk. I have the anti-mag syndrome and am trying to work my way around this site to get and share into. Are you still posting? Will appreciate hearing from you. Nancy W.
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Old 09-06-2009, 12:22 PM #26
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Default Have antimag and treatment working

After 10 years of diagnosis of monoclonal gamopathy and noone suggesting any help, I went to another neurologist who did blood tests and diagnosed me with antimag. I have had 13 plasma pherisis treatments since April/09 and have seen positive results. Not huge overnight improvement, but slow and I am walking better. I want to mention that during the last several years I have exercised 3 times/week swimming laps and really working legs and feet hard and I believe that this has helped recovery; i.e., keeping the muscles in good shape.
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Old 09-11-2009, 08:05 AM #27
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Default Nice to know you're out there!

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?
HERE!...
Well, I'm making my second trip to the hospital for my second in 4 months multi-day neuropathy drip, the admitting doctor indicated in our discussion my diagnosis of "anti MAG neuropathy" (to coincide with my mono clonal gammapthy. He Goggled the subject on my laptop - and I saw your post. One in the same issues Granacki - like listening to myself...same age (60), same almost everything. If this [2nd] 4-day treatment doesn't work...then there is a [dialysis] form of treatment which as described to me "replaces (someone elses) protein serum for the anti-MAG one I/we have." SO, one (painful) step at a time. It's all very frustrating, debilitating, and painful by the day. But I have resolved to keep walking (every other day as you for recovery minus my summer mowing), using my Bowflex every other day for strengthening, and hopefully we'll see results this [last] time around before we get into what my neurologist calls the "invasive" procedure I mentioned above. Also, had the scare where my N-Dr sent me to hemolotolgist/oncologist because of the mono clonal gammapathy of "unspecified origin," which could - or not - be associated with my neuropathy...and potential for or cause of bone/blood cancer(s). Negative, with Anyway, keep heart. Reply an/or email, we can either commiserate or see if we're both experiencing likewise issues and what one might be doing.
Good luck.
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Old 09-12-2009, 09:32 PM #28
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Originally Posted by drbuddie View Post
HERE!...
Well, I'm making my second trip to the hospital for my second in 4 months multi-day neuropathy drip, the admitting doctor indicated in our discussion my diagnosis of "anti MAG neuropathy" (to coincide with my mono clonal gammapthy. He Goggled the subject on my laptop - and I saw your post. One in the same issues Granacki - like listening to myself...same age (60), same almost everything. If this [2nd] 4-day treatment doesn't work...then there is a [dialysis] form of treatment which as described to me "replaces (someone elses) protein serum for the anti-MAG one I/we have." SO, one (painful) step at a time. It's all very frustrating, debilitating, and painful by the day. But I have resolved to keep walking (every other day as you for recovery minus my summer mowing), using my Bowflex every other day for strengthening, and hopefully we'll see results this [last] time around before we get into what my neurologist calls the "invasive" procedure I mentioned above. Also, had the scare where my N-Dr sent me to hemolotolgist/oncologist because of the mono clonal gammapathy of "unspecified origin," which could - or not - be associated with my neuropathy...and potential for or cause of bone/blood cancer(s). Negative, with Anyway, keep heart. Reply an/or email, we can either commiserate or see if we're both experiencing likewise issues and what one might be doing.
Good luck.
Hello, Dr. Buddie. Sounds like you and I share a diagnosis -- mine was 10 yrs ago as "monoclonal Gammopathy". The neurologist just gave it a name and sent me on my way -- guess they didn't have the science to treat it in those days. Recently went to OSHU and they did highly specialized blood tests, hence the "antimag" diagnosis and a process of plasma pheresis was recommended. Have had 13 treatments since April 2009 and am getting better - slowly. Yes, having the port installed and dealing with it over the months was scarey at first and certainly unhandy to live with. BUT VERY HANDLEABLE as compared to getting worse!!! The pheresis process took abut one hour each time. It takes all the plasma out and they discard it with all the bad proteins (and the good ones) and replace it.
The dialysis staff is hugely knowledgable and helpful and i always felt secure. As I have mentioned I AM GETTING BETTER - more sensation in feet and ankles -- I am more steady walking - haven't tripped in months. I've just had the port removed -- I may have a fistula in my arm installed if further treatment is indicated. dr. also talking about trying Rituxan in the future, as an alternative. I have a few months to see what happens. I am going to Europe in October and will celebrate my 70th Birthday on a rivership on the Rhine. Meantime, just wanted you to know that Plasmapherisis was a help to me. Good luck. Nancy W.
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Old 09-15-2009, 12:23 AM #29
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Originally Posted by NANCY W. View Post
Good morning. I am brand new to neurotalk. I have the anti-mag syndrome and am trying to work my way around this site to get and share into. Are you still posting? Will appreciate hearing from you. Nancy W.
I'm another one with anti-MAG neuropathy - diagnosed 7 years ago. Was on IVIg initially with good results. After about 4 years, it didn't seem to be helping with the symptoms any longer. I have trouble walking for very long, especially in hot weather. My feet just burn and feel terrible. Thus, I don't walk as much as I used to. My balance is poor - I really need to think about what I'm doing or I loose my balance and fall. No more running around in a hurry. I just started seeing a new neurologist in Seattle (Virginia Mason Hospital) and need to decide what kind of treatment to start. I would like to try the Rituxan, but my insurance isn't keen on paying for it. I am 54 years old and worry about what my future holds. I had an uncle die of Waldenstrom's Macroglobulinemia - so I worry about that as well. Would love to have some dialogue with others who have anti-MAG neuropathy as I feel alone.
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Old 09-16-2009, 01:32 AM #30
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Originally Posted by MAGLADY View Post
I wonder if you are still on this site..funny I have MAG too and have actually stayed on Lummi island.

Write back if your out there.

Maglady

Hi Maglady,

It's great to hear from you! How are you doing? How long have you had anti-MAG neuropathy? It is a bit over 7 years for me. I am seeing a neurologist at Virginia Mason in Seattle. I'm not sure what treatment to try next. IVIg worked for a while, but I've been off treatment for almost 2 years and the numbness, burning, poor coordination & fatigue just keep slowly progressing. I need to get started on something that works. Hope to hear from you soon. Where did you stay on Lummi Island?
NancyKay
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